Ethics in Social Science Research: Becoming Culturally Responsive 9781506328614

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Ethics in Social Science Research

To O, those who have the great fortune to know him, know why and A.K. who demonstrated the lyrics she loved in every interaction: All God's creatures got a place in the choir Some sing low and some sing higher Some sing out loud on the telephone wire Some just clap their hands or paws or anything they've got now. by Bill Staines

Ethics in Social Science Research Becoming Culturally Responsive

Maria K. E. Lahman University of Northern Colorado

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Title: Ethics in social science research: becoming culturally responsive / Maria K.E. Lahman, University of Northern Colorado, USA. Description: Los Angeles : SAGE, 2018. | Includes bibliographical references and index. Identifiers: LCCN 2017045195 | ISBN 9781506328614 (pbk. : alk. paper) Subjects: LCSH: Social sciences—Research—Moral and ethical aspects. Classification: LCC H62 .L2465 2018 | DDC 174/.93—dc23 LC record available at https://lccn.loc.gov/2017045195

This book is printed on acid-free paper. Acquisitions Editor:  Helen Salmon Editorial Assistant:  Megan O’Heffernan Content Development Editor:  Chelsea Neve Production Editor:  Karen Wiley Copy Editor:  Lana Arndt Typesetter:  C&M Digitals (P) Ltd. Proofreader:  Annette Van Deusen Indexer:  Robie Grant Cover Designer:  Candice Harman Marketing Manager:  Susannah Goldes

17 18 19 20 21 10 9 8 7 6 5 4 3 2 1

BRIEF CONTENTS

Prefacexiii Acknowledgmentsxv About the Author

xvii

• BECOMING ETHICALLY RESPONSIVE RESEARCHERS 1 Chapter 1 • Becoming Ethically Responsive Researchers: Introduction 3 Chapter 2 • Culturally Responsive Relational Reflexive Ethics in Research: The Three Rs13 PART I

Chapter 3 •

Research Ethics History: Regulations and Beyond43

Chapter 4 •

Research Pragmatics and Methodological Considerations71

EXEMPLARS OF BECOMING PART II •  CULTURALLY RESPONSIVE ETHICAL RESEARCHERS

93

Chapter 5 •

Ethical Research With Children: Always Othered?95

Chapter 6 •

Ethical Research With People Who Immigrate: A Stranger in a Strange Land117



Maria K. E. Lahman, Heng-Yu Ku, and Tekleab E. Hailu

Chapter 7 •

Ethical Research With People of Diverse Sexual Orientation: Inescapably Othered?143



Eric D. Teman, Maria K. E. Lahman, and Veronica M. Richard

Chapter 8 •  Ethical Research With People Who Are Homeless: “My Mind’s Not Homeless”167 Jeffery D. Roche, Tyler Kincaid, Maria K. E. Lahman, Suzanne V. Landram, Veronica M. Richard, and Trent L. Lalonde

Chapter 9 •

Visual and Virtual Ethical Research: Captured Forever187



Maria K. E. Lahman and Cindy Kronauge

Epilogue211 Appendix A. Research Ethics Sample Syllabus

213

Appendix B. Research With Native American Communities

219

Elizabeth Scott-Janda

Appendix C. Older Age Is a Chronological Part of Life, Not a Vulnerability

227

Elizabeth Smith

Appendix D. Ethics Should Be About Protecting Participants, Not the Research Institution

235

Suzanne V. Landram

Appendix E. The Use of the Internet and Skype in Qualitative Research

241

Samantha Estrada

Appendix F. Reflexive Course Experiences

247

References253 Index 277

DETAILED CONTENTS Prefacexiii Acknowledgmentsxv About the Author

xvii

PART I  •  BECOMING ETHICALLY RESPONSIVE RESEARCHERS

1

Chapter 1  •  Becoming Ethically Responsive Researchers: Introduction

3

Federal and Discipline Human Research Ethics Adherence

7

Developing Aspirational Ethics

7

Book Organization Elements of the Text

9 10

Chapter 2  •  Culturally Responsive Relational Reflexive Ethics in Research: The Three Rs13 Other in Research

14

Vulnerable in Research

17

Participant as Capable and Competent, Yet Vulnerable

20

Creating an Aspirational Research Ethics Stance

25

Minimalist to Aspirational Ethics

Why Create Your Own Ethical Stance? Beginning to Create an Ethical Research Stance

Exemplar of an Aspirational Ethics Stance Culturally Responsive Relational Reflexive Ethics Culturally Responsive Ethics Relational Ethics Reflexive Ethics Eight Strands of Culturally Responsive Relational Reflexive Ethics: The Stance in Practice

Reflexive Questions

25

27 27

29 31 32 33 34 35

39

Resources41

Chapter 3  •  Research Ethics History: Regulations and Beyond A Brief History of Contemporary Western Research Ethics Guatemala Syphilis Study

43 44 45

Tuskegee Syphilis Study Zimbardo Stanford Prison Study

Research Ethics Boards Institutional Review Board History Current Institutional Research Boards Institutional Review Board of the Future

46 51

58 58 60 62

Research Ethics Boards (REBs)

64

Reflexive Questions

67

Resources68

Chapter 4  •  Research Pragmatics and Methodological Considerations Informed Consent Simple Language Witnessed Verbal Consent Process Consent Process Responsiveness Cultural Aspects of Consent

71 72 74 76 78 79 79

Confidentiality81 Anonymity and Confidentiality 82 Certificates of Confidentiality 82 Pseudonyms83 Current Use of Pseudonyms 84 Pseudonyms and Power 85 Real Names Versus Pseudonym 87

Culturally Responsive Ethical Research Methodology

88

Reflexive Questions

89

Reflexive Course Experience 

90

Resources91

PART II  •  EXEMPLARS OF BECOMING CULTURALLY RESPONSIVE ETHICAL RESEARCHERS

93

Chapter 5  •  Ethical Research With Children: Always Othered?

95

Image of a Child

97

Contemporary Images of the Child

97

Children as Other

100

Nature of Adult Memory

101

Researchers’ Methodological Positioning to Child

103

Suggestions for Early Childhood Researchers

104

Ethical Considerations 105 Child Assent to Research 106 A Reflexive Stance 107 Intersubjectivity107 Innovative Research Methods 108 Children Are Experts 112 Being With Children 114

Always Othered

114

Reflexive Questions

115

Reflexive Course Experience

116

Resources116

Chapter 6  •  Ethical Research With People Who Immigrate: A Stranger in a Strange Land

117

Maria K. E. Lahman, Heng-Yu Ku, and Tekleab E. Hailu

Humans: A Migratory Species

119

Current Immigration Contexts

120

Immigrants121 Authors as Immigrants Maria’s Story Heng-Yu’s Story Tekleab’s Story

123 123 123 124

The Research Contexts We Reflect Within

124

People Who Are Undocumented

126

Diversity Immigrant Visa Lottery

128

International Students: Sojourner Immigrants

130

Ethical Considerations When Conducting Research With Immigrants 132 Reflexivity 133 Culturally Sensitive (Responsive) and Culturally Contextualized Research Ethics 134 Access 135

Conclusion 138 Reflexive Questions

138

Reflexive Course Experience

140

Resources141

Chapter 7  •  Ethical Research With People of Diverse Sexual Orientation: Inescapably Othered?

143

Eric D. Teman, Maria K. E. Lahman, and Veronica M. Richard

Background144 Research Ethics

144

PLAY With Words: Historical LGBTQQ+ Research Narratives 146 Script146

Historical Queer Research Narratives

150

Other150

Ethnography With LGBTQQ+ University Students Theoretical Framework Researchers’ Stance Educational Ethnography of an LGBTQQ+ Center

Ethical and Methodological Considerations Authentic Queer Narrative of Capable and Competent Yet Vulnerable Confidentiality, Anonymity, and Risk Aesthetic Research Representation Adhering to Culturally Responsive Relational Reflexive Ethics

152 152 153 154

155 155 157 159 163

Inescapably Othered?

163

Reflexive Questions

164

Reflexive Course Experiences

165

Resources165

Chapter 8  •  Ethical Research With People Who Are Homeless: “My Mind’s Not Homeless”

167

Jeffery D. Roche, Tyler Kincaid, Maria K. E. Lahman, Suzanne V. Landram, Veronica M. Richard, and Trent L. Lalonde

Current Contexts of Homelessness

169

People Who Are Homeless as Vulnerable Yet Capable and Competent

172

The Research Contexts We Reflect On

173

Ethical Considerations

175

Power 175 Access 177 Compensation Versus Coercion: Can You Spare Some Change? 179 Culturally Responsive Relational Reflexive Ethics 182

Reflexive Questions

183

Reflexive Course Experiences

184

Resources184

Chapter 9  •  Visual and Virtual Ethical Research: Captured Forever

187

Maria K. E. Lahman and Cindy Kronauge

Visual Research

189

Virtual Research

192

Internet as a Culture

192

Our Research Areas

193

Ethical Considerations

195

Visual Research Considerations Virtual Research Ethics What Is a Human Subject? What Is Public, and What Is Private? Data Security Culturally Responsive Visual and Virtual Research

195 197 199 200 202 204

Reflexive Questions

206

Reflexive Course Experiences

209

Resources210 Epilogue211 Appendix A. Research Ethics Sample Syllabus

213

Appendix B. Research With Native American Communities

219

Elizabeth Scott-Janda

Appendix C. Older Age Is a Chronological Part of Life, Not a Vulnerability

227

Elizabeth Smith

Appendix D. Ethics Should Be About Protecting Participants, Not the Research Institution

235

Suzanne V. Landram

Appendix E. The Use of the Internet and Skype in Qualitative Research

241

Samantha Estrada

Appendix F. Reflexive Course Experiences

247

References253 Index 277

PREFACE y invoking the word becoming in the book’s title, I seek to suggest not only B the need for ethical researchers to be lifelong learners who try to develop and change, but also the ideal of aspirational ethics. The word becoming is an attempt to capture the growth, development, and at times struggle this process will include. In this book, I illustrate moving from minimal research ethics to an aspirational stance. Readers will experience ethical dilemmas researchers share, while considering what they might aspire to through their own choices and what areas of their personal research might have ethical dilemmas. Part of becoming is a consideration of what we wish as researchers we would have done differently to prepare for the future. As researchers, if we set ethical goals slightly out of reach, we can always be open to moving forward and discovering our full potential. Culturally responsive ethical goals push us toward Becoming. The textbook is for research ethics courses that guide students through social science research experiences. It also serves as text in courses where social science students are being introduced to research, research ethics boards, and the spectrum of participants they potentially will work with. For courses where diversity, equity, privilege, and positionality are considered, this text is a well-suited companion piece, extending these important constructs into the ethics that are embedded in research interactions. In essence, Becoming is part of the contemporary social scientist’s resources when conducting research, and it will make an important addition to personal and institutional libraries. Filling a gap between explanations of how procedural ethics work in areas such as research ethics boards and highly philosophical books in ethics, the textbook also challenges understandings of participant vulnerabilities asking us to see people as complex and capable and competent yet vulnerable simultaneously. Course instructors and readers will find the book full of features created to support their becoming: (1) In textboxes, social science researchers share first-person ethical dilemmas that occurred in their research—these dilemmas are not always solved, so readers can discuss different ideas about how they might respond; (2) course activities are suggested to assist in extending learning; (3) resources for further engagement are suggested at the end of each chapter; (4) reflexive questions are posited that allow for individual thought or group discussion; (5) examples of ethical frameworks students have developed are presented in full as appendices; (6) the appendices also include a template of a syllabus for a course on research ethics.

xiii

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The first half of the book is foundational, and it covers Others in research, potentially vulnerable participants, culturally responsive research ethics, and the history of human research ethics boards. The second half of the book highlights specific groups of participants (e.g., children, immigrants, refugees, persons who are homeless, LGBTQQ+ groups), and visual and virtual research with humans as exemplars for culturally responsive research ethics. Chapters were developed around the opportunities I have been privileged to experience in-depth thanks to the research of coauthors. Most of these chapters were developed with coauthors, who are colleagues and former-students-now-colleagues, as we reflected on ethical aspects of their empirical work. It is my belief that this book, with its first-person narratives of research ethics that are often kept hidden, will be a resource that readers may use to delve deeply and reflexively into the field of research ethics and to create an aspirational research ethics stance that includes all participants and researchers as vital members in the research relationship.

ACKNOWLEDGMENTS hanks so much to Helen Salmon, Chelsea Neve, Karen Wiley, and the T supporting team at SAGE Publishing. Thanks to all the reviewers and editors of the articles and drafts that went into the creation of this book.

Specifically, Jason Lee Crockett, Kutztown University of Pennsylvania; Judith Conley, Lesley University; Artineh Samkian, University of Southern California; Robert L. Dahlgren, SUNY Fredonia; Bibhuti K. Sar, University of Louisville; Marilyn Bruin, University of Minnesota; Jacqueline Craven, Delta State University; Jerrell D. Coggburn, NC State University; Melissa Hirschi, Boston University; Aaron M. Kuntz, University of Alabama; and David M. Tack, Minnesota State University. I am not sure I can fully express my appreciation to the graduate students and colleagues I work with. Teachers will understand that, good and bad, these people allow me to knock my ideas up against theirs and to become deeply enriched as a learner and teacher. I’d like to thank my friends and childcare providers for creating supportive contexts for my children with caring, enriching experiences while I wrote this book. Moms cannot work without a seldom-acknowledged cadre of loving caretakers in the background. I am a product of the literature-rich, writing-focused, and storied home my parents provided within the unique culture of Mennonites. I appreciate my siblings allowing me to engage in ethical arguments and am sorry I did so often. Martin and Kate, you have taken me on ethical journeys I never anticipated. Thank you! As you are Becoming, your journey through life will give you many moments to exercise your finely tuned sense of right and wrong. Brent, it goes without saying, but should be said more often, nothing I do professionally, as a mom, could be done without you. You are a remarkable dad and man, but even more, thanks for reminding me of the pragmatic and living through it all with me as I dwell in the realm of ethics and education throughout my career.

xv

ABOUT THE AUTHOR Maria K. E. Lahman, previously a preschool-through-kindergarten teacher and laboratory school director, is a professor at the University of Northern Colorado. Maria is a qualitative methodologist in the Department of Applied Statistics and Research Methods and long-time co-chair of the Institutional Review Board, who specializes in advancing ethical research with young children and diverse groups. A graduate of Eastern Mennonite University, she challenges herself to weave aspects of social justice and peace into her pedagogy and scholarship. Her scholarship is focused on creating ethical solutions for culturally complex situations, young children, mothering, and aesthetic representation of research.

xvii

T

he first section of this book is foundational. Through the first four chapters, readers will develop a familiarity with and travel the path of the literature that informs the alwaysdeveloping framework I try to use for ethical decision making. I offer this framework not for readers to strictly adhere to, but as a model for readers to develop their own framework from the multiple contexts that inform their ethical goals. The material one needs to know in order to acquire a basic sense of standards and possible issues in ethical research with people is also presented. In Chapter 2, “Culturally Responsive Relational Reflexive Ethics in Research: The Three Rs,” I relate literature on Othering, vulnerable research participants, and challenge the designation of vulnerability as potentially patronizing or colonizing, forwarding the idea of capable and competent, yet vulnerable. I then trace the strands of the research ethics framework I developed and detail narratives I am privileged to share from research colleagues’ actual experiences as they struggle to make ethical decisions. Chapter 3, “Research Ethics History: Regulations, and Beyond,” is where I briefly overview the history of research ethics, the development of human research oversight ethics boards such as the United States’ IRB, discipline ethical codes, and exemplars from several nations’ research ethics boards (REBs). I reference scholars dissonant to the dominant historical ethics narrative when possible since listening to diverse stories enriches our understandings. Throughout, first-person narratives from just a few of those directly involved in questionable or clearly unethical research are shared. I am thankful for access to these storied histories, lest we forget. I have embedded Chapter 3 with many rich resources since scholars who have developed the

PART ONE

BECOMING ETHICALLY RESPONSIVE RESEARCHERS

1

2   Ethics in Social Science Research

conversation of research ethics long before this contribution have provided a detailed and accurate mass of resources on research ethics boards, REBs.1 In Chapter 4, “Research Pragmatics and Methodological Considerations,” I attempt the Herculean task of considering methodological areas that are embedded with ethical issues. The array of these issues is so vast that I have chosen to focus on participant consent and confidentiality.

1 Throughout the book, I refer to research ethics boards overall and generically as REBs since there is no shared global term for research ethics boards. Frankly, the acronym for the U.S. Institutional Review Board, IRB, is confusing to many. I hear researchers in the United States incorrectly interpreting IRB to stand for Internal Research Board, and the title is clearly lacking a fundamental word: ethics.

1 BECOMING ETHICALLY RESPONSIVE RESEARCHERS Introduction Action indeed is the sole medium of expression for ethics. —Jane Addams

A

book such as this starts with a definition of ethics. According to Merriam Webster’s, ethics is “an area of study that deals with ideas about what is good and bad behavior” (“Ethics,” 2017, Merriam Webster’s). Further, ethics can be defined as “moral principles that govern a person’s or group’s behavior” (“Ethics,” 2017, Oxford Dictionaries). Or perhaps, for a more contemporary reader, here is a definition from Wikipedia: Ethics is “the branch of philosophy that involves systematizing, defending, and recommending concepts of right and wrong conduct” (“Ethics,” 2017, Wikipedia). If ethics is the study of how humans decide what is good and bad behavior, then research ethics clearly must be the study of how researchers and the research community decide what is good and bad research behavior. Let’s now see how research scholars have defined ethics. It may be said in the broadest sense that ethics is the “justification of human action” (Schwandt, 2015, p. 91). In relationship to research, ethics is the justification of a researcher’s actions as well as how those actions affect participants, participants’ families, the researcher, the research community, public research consumers, and hopefully, beneficiaries. This justification is thought to be one that is right, proper, and moral (Israel & Hay, 2006), and good and virtuous (Israel, 2015). Ethical problems, issues, and 3

4  Part I ■  Becoming Ethically Responsive Researchers

dilemmas occur for most people on a daily basis. Whenever we ask ourselves the question, “What should I do?” there is a good chance an ethical issue or concern lurks in the background (Shamoo & Resnik, 2015, p. 1). To these definitions, Comstock (2012) succinctly adds, “Ethics means asking questions and looking for answers about right and wrong, good and bad” (p. 10). Sparkes and Smith (2014) further remind us, “Ethics is not a static event but a continual process” (p. 206). These definitions seem straightforward enough until we start to consider, Who decides and how do we decide what is good or bad or right or wrong? Even the most cursory examination of these questions allows us to see the close link ethics has to culture (how) and power (who). An examination of these links is the point of books such as this. I have long used Zora Neal Hurston’s (1996) definition for research as a working definition for much of my research practice: “Research is formalized curiosity. It is poking and prying with a purpose” (p. 143). Let’s extend this definition to research ethics. One reviewer of an early journal manuscript of mine objected to the use of the words poking and prying, opting for gentle euphemisms such as considering and reflecting. But isn’t Hurston simply being blunt with her word choice or, in other words, completely transparent? There are few other roles outside of being a research participant where we are asked highly personal questions, observed intently, or asked to be part of physically personal experiences that may have no direct benefit whatsoever to us. However, if other words such as wondering, questioning, asking, and reflecting make readers more comfortable, replace poking and prying with them while keeping in mind the active nature of the word curiosity Hurston used in her definition. Curiosity keeps the researcher in an ethically active state. At no time does a researcher say, “Well, the research ethics board said my study is approved. Ethics is done.” Instead, curiosity keeps ethics active in the researcher’s mind, and throughout the process of the research study, the researcher is always considering “what about this, how did that go?” The word purpose brings to this definition an understanding of the thoughtful, deliberate nature of research, the purpose in human research ethics being the enhancement of all aspects of human research through the respect of the participants who make research possible. Therefore, for now, my working definition of research ethics will be “research ethics is formalized curiosity—poking and prying with a purpose into what is good, bad, right, or wrong in research.” What is your working definition? I am making the assumption in this book that readers agree researchers, as a community, must be attentive to ethics. Israel (2015) set forth five reasons researchers should be concerned about ethics: (a) protecting others, (b) assuring trust so research can continue, (c) enhancing research integrity, (d) complying with professional expectations, and (e) providing researchers with a way to respond to new ethical challenges (e.g., Internet research). While one would hope researchers would naturally be attuned to ethics, at the least, researchers must have some minimal understanding of and compliance to ethical standards to

Chapter 1  ■  Becoming Ethically Responsive Researchers  

5

be in good standing with the research community. It seems Israel’s reason (c)— enhancing research integrity—could be the overarching point with all of the other points being ways to go about this vital endeavor. I conceived this book for several reasons. First, as a U.S. university research ethics board member (Institutional Review Board [IRB]) and/or co-chair for a decade and a half, I have had an ongoing concern that the increasingly daunting nature of research ethics review causes beginning and experienced researchers alike, to believe when the review board’s questions are addressed, our research is then ethical. As Sparkes and Smith (2014) say, it is not sufficient to assume that simply because ethical approval has been sought and granted by a committee, or that research is being conducted within the auspices of an organization with a clear code of ethics, that a research project will have satisfied all the requirements of ethical research. (p. 206) Instead, these initial steps must be viewed as minimalistic or procedural ethics, the most basic approval by a community of peers that our intent is ethical. As soon as researchers surmount the ethics review hurdle, they truly step into uncharted ethics—actual human contact. A consequence of the bureaucratized oversight is that scholarly writing on ethics has been dominated by debates around oversight when writers should be delving deeply into complex cultural concerns with methodological advice that enhances and supports ethical research work instead of prohibiting it. In this book, I illustrate the process of moving from research ethics board approval, a minimal ethical necessity, to a maximal or aspirational stance of personal ethics. Second, federal mandates and research ethics boards seem to have only a minimal understanding of, or perhaps concern for, the cultural complexity of both the domestic research and international research being conducted. We have to be careful in attempting to respect human rights that we are not actually paternalizing or even recolonizing Others into values that are not their own. The challenge here becomes how to balance human rights one may revere as a researcher (e.g. autonomy) with cultural groups who may believe otherwise. Third, as a qualitative research methodologist who conducts research with a federally designated vulnerable group, children, I am as frustrated as others are with the current state of ethics review (e.g., Denzin, 2009; Lincoln, 2005; Lincoln & Tierney, 2004). There seems to be some hope of positive change in the United States with the updating of the “Common Rule” or federal guidelines for human research scheduled for January 2018. (See the United States Office for Human Research Protections at https://www.hhs.gov/ohrp/regulations-and-policy/ regulations/finalized-revisions-common-rule/index.html for more information.) I believe firmly in joining in to help create change. When in my first month as a professor, the research ethics reviewer of my proposed ethnography of kindergarten culture asked the question, “What is culture in kindergarten—drinking

6  Part I ■  Becoming Ethically Responsive Researchers

Kool-Aid out of wine glasses?” I knew I needed to join the REB or risk not receiving tenure. As Lincoln and Tierney (2004) stated, qualitative researchers, and I add here researchers of groups designated as vulnerable, must themselves become involved in IRB activities by agreeing to serve when asked and by participating in review processes that help to educate other board members who may be less than well informed about new theoretical formulations of research and inquiry. Second, where possible or necessary, individual researchers must seek to speak with IRB members, defend the research that they or their students are undertaking, and seek to educate IRBs more broadly concerning issues of level of risk and potential direct benefit. (pp. 232–234) Thus started years of collaborative work helping to guide the university to an understanding of how qualitative researchers and researchers of groups designated as vulnerable are trying to conduct research and how to be ethically compliant without stifling well-intended research. This book is intended to help guide readers through many aspects of ethical concern that surround human research. Fourth, while opportunities for researchers to learn and reflect more about ethics seem to be on the upswing, too often these opportunities seem to be formalistic presentations of minimalist ethics. Israel (2015) suspects, [C]ourses on, research—if they discuss ethics at all—do so as a separate chapter or week. Ethics are rarely integrated into material as a whole. Typically then, it is not until junior researchers are compelled to respond to research ethics committee requirements that they give detailed consideration to ethical issues. (p. 185) At the university I am affiliated with, this has been the main way research ethics are taught. However, for the past 5 years, we have had a one-credit-hour graduate course on human research ethics. It is now being added to the required part of the curriculum for research methodologists and statisticians. The addition of the requirement was promoted by people other than me, a happening I find highly encouraging. I hope the social science and other education departments will require the research ethics course. Additional research ethics initiatives have been developed elsewhere on campus, and we are beginning discussions of a day set aside to consider the role of ethics throughout higher education. I believe human research ethics courses should and are being developed elsewhere. Finally, much of what we as students and scholars have access to regarding resources on research ethics is boring, or written in such a complex fashion as to be inaccessible to novices. Richardson’s (1994) candidly written and often quoted admission applied in this book to ethics writing underscores this concern:

Chapter 1  ■  Becoming Ethically Responsive Researchers  

7

I have a confession to make. For 30 years, I have yawned my way through numerous supposed exemplary qualitative studies. Countless numbers of texts have I abandoned half read, half scanned. I’ll order a new book with great anticipation—the topic is one I’m interested in, the author is someone I want to read—only to find the text boring. (pp. 516–517) Boring or inaccessible text is not a concern due to a need to be entertained. It is a concern because the topic of ethics is alive and vital with the need for researchers to reflexively grapple with ethics being as compelling today as it was in the wake of Nazi atrocities, Tuskegee’s horror, and Zimbardo’s dorm jails. Therefore, I decided to make an attempt to illustrate the living, vibrant nature of human ethics since as Jane Addams declared ethics is in action alone. We can sit in an armchair and think about ethics, we can fill out mountains of regulated forms as to what we intend our conduct to be, but in the end, our actions are the fruit of our ethical thought and intent.

FEDERAL AND DISCIPLINE HUMAN RESEARCH ETHICS ADHERENCE At the outset of the book, I review discipline research codes and research ethics boards. It is necessary for the ethical researcher to be in compliance with these codes and regulations to be in good standing with the research community. Also, if we do not understand something, we do not have a sound footing from which to change, influence the status quo, or even conduct critical reviews. A thorough understanding of our past and current state allows us as researchers to journey into the realm of aspirational ethics with an understanding of what we are reacting to or against.

DEVELOPING ASPIRATIONAL ETHICS Minimal ethical codes are also referred to as mandatory ethical codes, or what Guillemin and Gilliam (2004) have termed procedural ethics. Examples include the U.S. IRB regulations (The Common Rule), or some academic codes and may be said to be deontological or consequentialist in focus, examining participants’ rights and outcomes of the research, respectively (Castañeda, 2006; Foster, 2001; Israel & Hay, 2006; Schwandt, 2007). While minimalist ethical codes cover foundational concerns, scholars have urged that researchers’ ethics should move beyond these codes due to the irrepressible nature of all human research, the in-depth, long-term relationships that may develop between participants and researchers in some forms of human research, and the increased calls for researchers to engage in social justice and the

8  Part I ■  Becoming Ethically Responsive Researchers

promotion of human dignity (e.g., Cannella & Lincoln, 2018; Christians, 2018; Denzin & Giardina, 2010; Ellis, 2007; Liamputtong, 2007; Schwandt, 2007). This type of research ethics has been categorized as alternative (Sparkes & Smith, 2014), and it fits well with what Christians (2018) has described as an ethics of being, drawing on Denzin’s advocacy for research ethics to align with hope and freedom (Denzin, 2009). I describe research ethics that attend to issues above and beyond those mandated by procedural ethics as aspirational ethics. Aspiration (n.d.) is a “strong desire to achieve something high or great” and “an aspirational code would be intended to reach a higher ethics standard that supersedes being in compliance.” It is important to note I am not advocating a rejection of minimalist codes but, in light of the culturally complex and unpredictable nature of human research that does not allow researchers to anticipate all consequences, feel additional considerations that cannot and should not be regulated are necessary for ethical research. Researchers should consider developing a personal aspirational ethical stance that goes above and beyond procedural ethics. Researchers will want to reflexively consider how their professional experiences, discipline training, personal spiritual or religious beliefs, and the ethical culture of the communities they research impact the way they wish to conduct themselves during human research. Early in my career, as I wrestled with an ethical research dilemma aloud to my husband, he simply asked, “Are you a person first or a researcher?” The answer seemed so obvious, but the reversal of role from a researcher who is a person to a person who conducts research has framed my entire ethical stance. The best and the good that I believe in and strive for in my personal life is how I should conduct myself as a researcher. For me, these roles are inseparable. In this book, readers will work through actual ethical scenarios with researchers, while considering what they might aspire to through their own choices and what areas of their personal research might have ethical dilemmas. Early on, my editor, Helen Salmon, suggested the word becoming as a way to capture the growth, development, and at times struggle this process will include. Part of becoming is a consideration of what we wish as researchers we would have done differently to prepare for the future. Israel (2015) called this area of research ethics “beyond regulatory compliance” (p. 190), writing, “the challenge is to resist temptation to allow debates over regulation . . . to diminish our ethical imagination” (p. 191). In an effort to demonstrate becoming an ethically responsive researcher, I will advance the framework I developed with the help of colleagues (Lahman, Geist, Rodriguez, Graglia, & Deroche, 2011) and termed Culturally Responsive Relational Reflexive Ethics (CRRRE). This framework builds on Villegeas and Lucas’s (2002a, 2002b) powerful work with culturally responsive teaching, and it draws on caring literature (Noddings, 1984, 1988, 1992), Ellis’s (2007) relational ethics, and a stance of reflexivity, which is integral to responsive research.

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BOOK ORGANIZATION The book is organized into two main parts. In Part I, consisting of four chapters, information considered foundational to research ethics and the orientation of this book is presented. Some of this information is introductory but invaluable for referencing and creating a foundation for considering one’s own ethical stance. Part I. In Chapter 2, I detail how human research might be described as an attempt to understand the Other. Distressingly, the history of human research reveals much of the research has recolonized, or stigmatized the Other. I then present an aspirational research ethics framework I created with the help of colleagues (Lahman et  al., 2011). This is an example of the type of aspirational ethical stance readers are encouraged to frame for themselves. The areas of the framework—cultural responsiveness, relationships, and reflexivity (the three Rs)— are each detailed. A chart of the framework illustrates this stance. After immersing themselves in this chapter, readers should be in a position to begin to consider what threads they might wish to weave into an aspirational ethics stance of their own. Chapter 3 is foundational in the review of the history of Western ethics, the development of research ethics in the United States, specifically, with information on other countries as well. Throughout the chapter, first-person narratives of participants in unethical and/or infamous historical research are detailed. The chapter ends with a call for researchers to understand research ethics boards are only the threshold regarding ethics. Unethical research still exists and, therefore, we must be vigilant with our own practice and as a research community. Research methodological ethical considerations are issues that need careful thought at the outset and throughout an entire research study. These issues have no simple answers, might not be fully anticipated, and are culturally complex. Our decisions might rest on what we believe as researchers, balanced with what we perceive the participants we research believe and what the community of researchers believes. Since there are so many possible issues, only some of the primary ones, including consent, confidentiality, and pseudonyms, will be considered in Chapter 4. Part II. These exemplar chapters illustrate actual researchers grappling with varying ethical issue in diverse contexts. These chapters have been developed from my personal experiences and the privilege I have encountered in collaborating with many researchers who are exploring areas of diversity loaded with culturally complex ethical moments. None of the original works could have been written without the researchers, so while I have updated and/or rewritten all of the material, it is my honor to highlight my collaboration with colleagues. In Chapter 5, I consider the designation of children as vulnerable in research and argue even the most knowledgeable, well-intended researcher will only understand children as always Othered. Research experiences with persons who are immigrants are reflected in Chapter 6. All immigrants share a transition from

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a country of origin to a new nation. This aspect of immigration alone calls for increased awareness and understanding on the part of the researcher. However, immigrants come in many forms: undocumented, documented, voluntary, and compelled. Variations of immigration and related research ethics are explored in this chapter, which is framed in the increasingly divisive political climate of our time. The idea of always Othered is extended in Chapter 7 with a discussion of ethical research with people of diverse sexual orientation and gender, possibly being inescapably Othered. As part of an educational ethnography of a sexually diverse university cultural center conducted by a coauthor, Eric Teman, we developed an ethical stance in relationship to these research constituents. The murder of a community member who was transgender, the suicide of a study participant who was gay, and the corresponding everyday research occurrences precipitated deep reflection of ethical considerations when studying persons who might be Othered due to sexual orientation or gender. In Chapter 8, persons who are homeless are discussed in relation to research ethics. One can start to see how the exemplar chapters overlap since a participant could be a child who is homeless or an immigrant or sexually diverse and homeless. In light of the increase of homelessness and persons who are displaced and/or highly mobile, the need to consider ethical issues when researching homelessness is pressing. Ethical aspects of human researchers’ burgeoning use of visuals and virtual spaces are considered in Chapter 9. A discussion of data security and the Internet as a culture and unique research space are presented.

ELEMENTS OF THE TEXT Narrative apercu.  An apercu is a brief insight or impression. By joining the word apercu to narrative, I mean to convey short stories that allow insight into the author or researcher. Narrative apercus will be shared throughout the text denoted by italicized fonts. Much of my scholarly work uses this method of conveying experience. I have found many readers appreciate these bits of insightful writing, while others thoroughly dislike them. The discomfort with narrative apercu is usually voiced as the writing is jolting or what was the point of the story. So, I want to explain in the introduction, for those who wish for a familiar scholarly text, the role of narrative apercus. First, the narrative interruptions are deliberate. I wish readers to be gently jolted out of the scholarly habit of being able to skim or reach into a text blindfolded for the one small section they need. Drawing on Lather (2007), I have developed these narratives as another voice that speaks within the scholarly voice of authority with which we are so comfortable. This voice is intimate, reflexive, hesitant at times, and willing to show missteps and weaknesses. This voice has questions—not answers. Second, I will not be explaining the point of each narrative apercu. Constructivists have taught us if I tell you what the narratives mean, my explanation will become a “fixed fact.” E. M. Forster said, “Spoon feeding in the long run teaches us nothing but the shape of the spoon.” Instead,

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I wish the reader to ponder the story, discuss it with others, and develop multiple meanings, some of which I imagine I will never have conceived of. Third, I have to share, as I write, I am bending back reflexively upon my previous points and laughing at myself. I cannot imagine any traditional scholar taking the time to justify or explain to a reader how to navigate their solidly predictable text. It seems to be the position of the qualitative scholar to always be explaining and defending. Research ethics vignettes.  The vignettes are highlighted throughout the book in textboxes. Each vignette features a researcher sharing in first person an experience they had in the research field that unsettled them or filled them with curiosity about how they should respond in a respectful, ethical manner. The researchers felt they had little guidance and needed to consider carefully how they should proceed. DeMarrais (1998) in her book titled Inside Stories has called this sharing of researcher stories “mucking around with methodological and ethical issues” (p. xi). Hertz (1997) has noted the many ethical questions that arise when researchers are willing to share behind the scenes stories saying How much of ourselves do we want to commit to print? How do we set the boundary between providing the audience with sufficient information about the self without being accused of self-indulgence? Do we risk appearing foolish to our colleagues (and a lay audience) when we admit to naiveté, ignorance, and or uncertainty . . . when we let slip the cloak of authority that traditionally has set us apart from the people we study? (p. xvi) These researchers are brave, lifelong learners, willing to share the tenuous nature of their position as researcher so we can learn rather than taking the traditional scholarly stance of knowledge broker. Reflexive questions.  Reflexive questions at the end of each chapter are presented to allow individual readers to ponder their personal research work. This process might occur reflexively in the reader’s mind, in dialogue with others, or in a researcher journal (e.g., Janesick, 1999). When the text is used by groups, the questions may be utilized for small- and whole-group discussions and through free writing prompts within a class period, or journal writing entries when at home. Most of the questions have been vetted over the years with graduate students and researchers. A meaningful exercise would be to generate lists of more questions to add to these. If the wording or context does not seem to apply directly to you, the reader, change the context to one that is relevant. Who do you research? What is their context? What ethical values do they hold dear? Answers are deliberately not supplied since, as pointed out previously, these answers quickly become treated as facts instead of as one possibility. Resources.  Each chapter will end with resources for further reading. In texts of this sort, much of what is written is a general survey of the topic, a starting point

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for an ethical journey. The resources provided have been carefully chosen to allow readers to delve more deeply into topics of interest, thus continuing the process of becoming. The nature of Internet resources is progressive, changeable, and unpredictable and unfortunately, some areas seemed to have few resources. Therefore, a course assignment might be to find three new Internet ethics resources and post them to the course discussion board with a brief explanation of the pros and cons of each resource. Enough of organizing and anticipating! Let us start our journey. A journey of Becoming. A journey into one of the most unpredictable, vital, and fascinating aspects of human research: ethics. As my son Martin says, “May the journey be epic.”

2 CULTURALLY RESPONSIVE RELATIONAL REFLEXIVE ETHICS IN RESEARCH The Three Rs1 A [hu]man without ethics is a wild beast loosed upon this world. —Albert Camus

O

ther, Others, Othered, Otherization, Otherness, alien, different, dissimilar, distant, etic, exotic, foreign, outsider, strange, unfamiliar, unalike, unknown, unusual. In this chapter, I review the idea of Other in research, the federal designation of certain participants as vulnerable in research, and the contemporary concept of participant as capable and competent. Further, I challenge these stances by arguing research participants may be both capable and competent yet vulnerable at the same time. I also intend this discussion to provide readers with the foundation of the stance from which I view research, so readers can engage with the text with my biases and perspectives in mind. I trace the strands of the research ethics framework I  Thanks to my coauthors and the journal Quality & Quantity for their contributions to and support of an earlier version of this work, Lahman, M. K., Geist, M. R., Rodriguez, K. L., Graglia, P., & DeRoche, K. K. (2011). Culturally Responsive Relational Reflexive Ethics in research: The three Rs. Quality & Quantity, 45(6), 1397–1414. Thanks also to Villegas and Lucas (2002) for their extensive work in the area of Culturally Responsive Teaching, which is the foundation of this chapter.

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developed, with colleagues (Lahman, Geist, Rodriguez, Graglia, & DeRoche, 2011), the three Rs—Culturally Responsive Relational Reflexive Ethics (CRRRE)—and detail ethical dilemmas I am privileged to share from research colleagues’ actual experiences as they struggle to make ethical decisions. I first became interested in the issues surrounding working with people Maria:  from diverse cultures when as a novice teacher I took a position teaching in a setting with some cultural diversity. I found the diversity exciting, yet also confusing and intimidating at times. As a White woman who had the position of “authority” in the classroom, I desired to understand the parents’ hopes and dreams for their child so I could support their efforts. Initially, I turned to the literature and experts’ advice in an attempt to understand how to effectively relate with families. When I taught a child from a family which was Muslim and Pakistani, I read a book on understanding Islamic culture and talked to other teachers who had worked with Muslim families and an expert at the local university on Islamic culture. Nervous and naïve, I did not ask the parents of the child any specific cultural questions. Respecting the culture of the family and causing no conflict was so important to me I essentially shut off communication. This was a practice I continued that year until I received a wake-up call when a Hindi family informed me, contrary to my assumptions, they didn’t follow any religious eating customs. I realized in my effort to understand the families, I was inadvertently treating them with racism at worst and at best as a stereotype. By not involving the specific family in my quest for understanding, I was lumping the family into a vast culture that might not account for or represent the whole of who they are. In essence, I was Othering them.

OTHER IN RESEARCH2 An unrestrained acknowledgement of the Other . . . a genuine turn to the Other is needed. —Avakian (2015, p. 81) According to Johnson et al. (2004), “Othering is a process that identifies those that are thought to be different from oneself or the mainstream and it can reinforce and reproduce positions of domination and subordination” (p. 254). Johnson et  al. traced the concept of Othering to de Beauvoir’s 1952 feminist writings regarding how dominant society places negative selves on Others, while Schwandt (2001)  An earlier version of this section appears in Lahman, M. K. E. (2008). Always othered: Ethical research with children. Journal of Early Childhood Research, 6(3), 281–300.

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pointed to Said’s (1978) ground-breaking work on Orientalism as a place where understanding the Other was problematized early on. People who are Othered may be marginalized, have less opportunity, and/or be excluded. Othering is powerful and hard to sway or influence since it is not only the way we mark people, but also the way we identify ourselves in relation to others (Johnson et al., 2004). Through a compelling treatise extending Spivak’s (1988) work, Beverley (2000) conceived of the relationship between the researcher and the researched (or “subaltern”) as “constructed out of the opposing terms of a master slave dialectic: metropolis/periphery, nation/region, European/indigenous, creole/mestizos, elite/popular, urban/rural, intellectual/manual, male/female, lettered/illiterate” (p. 562)—a description of the dominant, bifurcated relationship with the Othered. Looking back across history, the relationship may be described as the powerful (researcher) examining the exotic, unknown, unexplored, or Othered (participant). Denzin and Lincoln (2000c) asked, “Who is the Other? Can we ever hope to speak automatically of the experiences of the Other, or an Other? And if not, how do we create a social science that includes the Other?” (p. 1050). The idea of Other in research indicates a person who is at the least unfamiliar and at the most grossly marginalized. Schwandt (2015) reminds us what we cannot forget or escape through a critical stance; all research is based on an attempt to understand the Other. If we understood, there would be no Other. Schwandt (2001) has said, “an examination of Otherness brings a reconsideration of the Other” (p. 181). Vidich and Lyman (2000) wrote that the essential research concern is, “How is it possible to understand the other when the other’s values are not one’s own?” (p. 41). “We potentially walk into the field with constructions of ‘other’ however seemingly benign, feeding the politics of representation and becoming part of a negative figuration” (Fine, Weis, Weseen, & Wong, 2000, p. 117). Much of research has recolonized the participant as Other and perpetuated what is already believed about the Other (Fine et al., 2000). Research may be utilized to better control the Other rather than to understand or improve the Others’ lives. While historically and currently the Other has been an object to theoretically dissect and “archive” (Denzin & Lincoln, 2000a, p. 13), critical scholars’ examinations are allowing the concern of Otherization in research to become transparent. The concept of Othered may be seen in the areas of indigenous person studies (Denzin & Lincoln, 2000c, p. 1050), queer theory (Gamson, 2000), politics (Tope, Pickett, Cobb, & Dirlam, 2014), interview methodology (Roer-Strier, 2015; Sands & KrumerNevo, 2006), children/youth (Staunæs, 2005), etc. Scholars in critical fields such as queer theories, feminism, multiculturalism, anthropology, and post-modernism are considering the issue of Other (Schwandt, 2001). Roer-Strier and Sands (2015) wrote, Feminist researchers have played a leading role in these debates (Olesen, 2011). Responding to assumptions of neutrality, rationality, and objectivity in what was considered ideal social science research, they proposed that researchers engage in more complex thinking about power relations, positionality, and reflexivity as means to disrupt modernist assumptions (Wolf, 1996). (p. 252)

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While Othering has been developed theoretically and conceptually in the literature, there is a dearth of empirical research, illustrating examples of Othering practices (Johnson et al., 2004) unexperienced readers may wish to draw upon. Johnson et al. (2004) have noted a recent empirical expansion showing psychological, social, and health consequences such as depression (Littleford & Wright O’Dougherty, 1998), stress (Noh et al., 1999), shorter life expectancy, and barriers to health care access for those who are Othered. Johnson et al. are one group of researchers who have sought to fill this gap in the area of health research. Their findings seem to be instructive to social science in general. Johnston et al. identified three areas of Othering practice in the discourse of health care professionals explaining their experiences with patients who were not in the majority. • Essentialized Explanations. “Involves making overgeneralization about . . . culture, race, location, social background, and health care practices” (Johnson et al., 2004, p. 261). • Culturalized Explanations. Culture is treated as a reflection of stereotypical, overgeneralized opinions instead of as a “dynamic and lived experience” (Johnson et al., 2004, p. 263). • Racialized Explanations. For educated professionals, these explanations are often coded and hidden behind discussions of ethnicity and class since any overt reference to race may be seen as racist. Behind this hidden language, one will see an emphasis on the Others’ differences as being deficiencies (Johnson et al., 2004, p. 264). It must be noted, due to the limitations of language, it may be nearly impossible to describe certain experience without speaking in an essentialized manner. Maria: I recently found myself as though vocally paralyzed when returning from a trip to an area of the world few of my acquaintances have visited. While I always supplied caveats in brackets around whatever I said, I found it next to impossible not to speak in romantic ways about experiences that were profoundly positive, and in comparative, bifurcated ways when explaining an experience. Perhaps acknowledging our awareness of the dilemma language limitations poses is a step toward reducing Othering. I pressed on verbally despite this problem because I strongly feel we must not stop communicating due to trying to be appropriate. I have noticed in classes I teach some members stop speaking due to a constant feeling of every word being critiqued. When we lose dialogue, we lose the opportunity for change. Silent Othering is surely the most difficult form of this injustice with which to contend. While researchers have argued for the possibility of crossing the void to become like an insider (Mandell, 1988), I have argued some groups are always Othered

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(Lahman, 2008). In this text, I continue to explore the idea that children may be always Othered (Chapter 5) and with colleagues explore if persons of differing sexual orientations and genders may be inescapably Othered (Chapter 7). So what then do we do as researchers? Krumer-Nevo and Sidi (2012) have said, Knowing the Other is one of the major motivations for doing qualitative research. The researcher wishes to know the Other in order to give a voice to people [now a critiqued phrase] who were previously ignored or were the object of distorted conceptions. The motivation to know the Other may also be beneficial for the research participants because, unlike other kinds of inquiry, in qualitative research they have the opportunity to experience recognition, acknowledgment, and empathy. In this respect, knowing the Other possesses a potential for emancipation from binding stereotypes. However, the desire to know the Other can be a potential source of dominance, when it becomes a mode of subduing her in a network of interpretations and representations. (p. 299) A first step toward knowing the Other is of course knowing oneself: Before the search for the Other comes the search for one’s own self, one’s own beliefs, principles, and dogmas, far from the obscurities, disguises, and superficial manner in which things have been interpreted by and conveyed through the centuries. This is the reason that, before approaching the Other, one has to rethink one’s own claims. One has to take pains for searching for Truth, trying to understand and to reinterpret what has been so far said. (Avakian, p. 80, 2015)

VULNERABLE IN RESEARCH Vulnerable: accessible, assailable, defenseless, exposed, helpless, impotent, liable, naked, on the spot, out on a limb, powerless, sensitive, sitting duck, susceptible, unguarded, unprotected, unsafe, weak, wide open. A closely connected idea to the Other is that of vulnerability. Methodological discussion is plentiful regarding vulnerable participants (e.g., Liamputtong, 2007; Staunæs, 2005). Related terms in research literature include sensitive, hardto-reach, or hidden populations (Adler & Adler, 2001; Liamputtong, 2007). It is important to consider what the designation of a group of people as vulnerable in research might mean. A dictionary definition describes the word vulnerable as when one is “susceptible to physical or emotional attack or harm; a person in need of special care, support, or protection because of age, disability, or risk of abuse or neglect” (“Vulnerable,” 2017, Oxford Dictionaries). To expand on this definition, I opened this section with synonyms and phrases that represent nuances of the word vulnerability.

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White, upper-class, or middle-class, documented citizen, educated researchers who hold power positions in society (i.e., medical professionals, university professors, government employees) typically conduct research on/with participants who are perhaps uneducated, racially diverse, of lower classes, undocumented, and vulnerable. The following phrases underscore the possible positionalities of these participants: “doubly vulnerable persons” (Moore & Miller, 1999, p. 1034), those with “multifaceted vulnerability, . . . overlapping marginality” (Liamputtong, 2007, p. 4), and “intersecting marginalities” (Lahman, 2008, p. 282). In some countries, certain groups are federally described as “vulnerable” in research or, as worded in Canada, in need of “special care.” In the United States federal regulations governing human subjects of vulnerable groups state “the IRB . . . should be particularly cognizant of the special problems of research involving vulnerable populations, such as children, prisoners, pregnant women, mentally disabled persons, or economically or educationally disadvantaged persons” (Office of Human Research Protection, 2010). In Canada, special care is required for underdeveloped communities, women, youth/children, aboriginals, and prisoners. Great Britain, similarly to the United States, has the vulnerable designation but, notably, includes people with communication difficulties, patients receiving care, and people who are engaging in illegal activities. One of the major concerns surrounding vulnerable designations is increased regulation around the research review process for these groups, which may in turn decrease needed research (White, 2007). Juritzen, Grimen, and Heggen (2011) sounded the following warning: The intervention of the monitoring agencies could thereby produce unintended effects, by having potentially negative consequences for those that the ethical codes of research have been meant to protect: vulnerable and exposed participants. One objection which is being raised claims that this principle depends on the precondition that those who participate in research projects are competent to provide consent. This excludes large groups, such as children and those who are unconscious, mentally unstable, mentally disabled or demented, who all in various ways could stand to benefit from having their living conditions elucidated by research. (p. 643) The body of literature that critiques the designation of vulnerable in research does not always provide practical ways forward. When creating this designation, whether governments were trying to protect groups of potentially vulnerable individuals or trying to protect governments, what are ways to enhance the purpose of the required designation? First, understand the historical and current contexts of people designated as vulnerable in research. Second, consider all people who give their time to be in research as potentially vulnerable. See Box 2.1 for an extended discussion of this stance. Third, consider examining the vulnerability of participants you research through their strengths and capacities, and not solely their vulnerable status. Fourth, consider engaging in collaboration with the constituents

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you research as much as possible in all phases of research. REB members should also consider this so that there is clear understanding of the reviews they make in relation to the desires of the groups being researched. Iltis, Wall, Lesandrini, Rangel, and Chibnall (2009) presented several scholars’ work who have provided other ways to consider vulnerability, one of which is Kipnis. Kipnis (2001) developed a bioethical taxonomy in which he argued the focus on an entire group as vulnerable should shift to the conditions that cause someone to be vulnerable. I have slightly reframed the taxonomy for social science researchers (see Table 2.1). In this taxonomy, any participant may be vulnerable depending on differing aspects of power. The National Bioethics Advisory Committee (NBAC; 2001) adopted a framework similar to Kipnis’ but removed the section termed “infrastructural” and added a socially vulnerable group. While to my knowledge neither of these organizing structures of vulnerability have been adopted by a REB, they are useful in fueling conversation and pointing a way forward rather than offering criticism without suggestions for improvement. Vulnerable as a label, while most likely well intended as we have seen, has been strongly critiqued in the literature. At the least, there is a concern of paternalism (White, 2007) and at most, a potential disturbing reduction in research with populations designated as vulnerable (Iltis et  al., 2009) due to what has been described as aggressive, impinging oversight by research ethics boards. Therefore, I am advancing the notion of capable and competent, yet vulnerable participants (Lahman, 2008). This position is multifaceted and takes into account that power issues may not be resolved or even may be irresolvable. TABLE 2.1  ■  P  otential Vulnerability in Participants: A Research Ethics Taxonomy Potential Vulnerability

Researcher Question

Examples

1. Cognitive

Does the participant have the capacity to deliberate about and decide whether or not to participate in the study?

cognitively disabled, historically/legally children

2. Judicious

Is the participant liable to the authority of others who may have an independent interest in that participation?

students, armed forces, prisoners

3. Deferential

Is the participant given to patterns of deferential behavior that may mask an underlying unwillingness to participate?

low-in-a-hierarchy workers, novice workers

(Continued)

20  Part I ■  Becoming Ethically Responsive Researchers TABLE 2.1  ■  (Continued) Potential Vulnerability

Researcher Question

Examples

4. Medical

Has the participant been selected, in part, because he or she has a serious healthrelated condition for which there are no satisfactory remedies?

hospice patients, memory care residents

5. Allocational

Is the participant seriously lacking in important social goods that will be provided as a consequence of his or her participation in research?

homeless, poor

6. Infrastructural

Does the political, organizational, economic, and social context of the research setting possess the integrity and resources needed to manage the study?

sites of natural disaster or political instability, lack of ethical oversight from mentors, colleagues, REBs

Source: Adapted from Kipnis (2001).

PARTICIPANT AS CAPABLE AND COMPETENT, YET VULNERABLE Maria: Have you ever thought about the amount of pigs in Western literature from traditional tales (“The Three Pigs”) to contemporary authors (E. B. White, King-Smith)? Since I grew up in this norm, I can’t say I thought about porcine literature one way or the other until I taught my first international Muslim child, Farida (I referred to earlier), in a preschool class. We were enacting a little skit from a piece of barnyard literature we had enjoyed. I frequently ended any study of a book we were working with by asking the children how we might dramatize it. In this case, I felt sure I assigned the various animals and in essence “required” Farida to be the pig in the play. From a Western perspective, the pig was cute and funny. I could tell Farida was excited or nervous since she giggled a lot during the skit, but that was all I picked up on. Soon her gracious parents scheduled a conference with me and in the kindest way possible explained that by asking Farida to be a pig, it was as though I had asked her to enact

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being something akin to “a prostitute.” I am sure you can imagine as a young teacher in her early 20s who felt culturally competent, and whose family had worked in some of the most Islamic concentrated areas of the world such as Somalia, how awful I felt about my actions. I was aware of the taboo on pork and the uncleanliness of pigs, but had not connected this with the highly anthropomorphized pigs of literature. The family and I connected deeply over this learning experience. Farida was their oldest child and they intended to stay in the United States long term. I explained I felt they would need to tell her teachers this same information every year for a while given the dominance of pigs in the US early childhood language arts curriculum. I learned a powerful lesson that cultural understanding is not possible at the outset of a relationship. The family also demonstrated to me that openness and kindness when dealing with ignorance may be the best way to lead to deep learning. What is needed is a willingness to communicate, be responsive, and to allow yourself to remain in tension3 with perspectives you may be unfamiliar with or not be able to understand. As a researcher and methodologist whose primary areas of experience and training are the worlds of young children, for much of my career, I have been nested in what has been called the New Childhood Sociology (James, Jenks, & Prout, 1998; James & Prout, 2015) precipitated in part by research such as Corsaro’s compelling research with preschoolers (e.g., 1985) and a global movement to recognize children’s rights and agency (www.ohchr.org/en/professionalinterest/pages/ crc.aspx). As I began to work with REBs extensively, I have felt concerned about the designation of vulnerability. The fallacy behind the vulnerable designation is the same that has been critiqued in hate crime literature (Westbrook, 2008). It may be we are again paternalizing, essentializing, stereotyping, or racializing someone by putting them in a vulnerable category perhaps even unknown to them. A question to consider is should a potentially vulnerable person need a federally mandated designated label to receive the respectful treatment they deserve? Why not then consider all people potentially vulnerable as articulated in Tyler’s ethical stance (Box 2.1)? The possible fallacy behind this stance is we may overshadow the vulnerable person and contexts while trying to point out we are all potentially vulnerable, thus ignoring the vast privileges accorded to many of us, myself included, that buffer our vulnerabilities. However, it certainly is responsive to hold all the human participants we work with as capable and competent, yet potentially vulnerable, as we design and enact our research studies. I use tension here in reference to the pull that occurs on a tightened rope or string. When the rope is slack, no action is occurring. When pulled tight, there is a sense of energy, being ready, but for what? When we stay in tension with an idea, we are in a receptive mode ready to receive, but we do not know what will be the outcome yet. It may be one may need to retain this listening posture for extensive periods of time in order to begin to have any sense of understanding.

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BOX 2.1. ALL PEOPLE ARE POTENTIALLY VULNERABLE: A RESEARCH ETHICS STANCE Tyler Kincaid (The following is an example of an aspirational ethical stance developed in a graduate research ethics course. See the appendices for more examples.) When conducting research with human participants, whether it is within the confines of a public or personal setting, whether it is conducted with one person or one hundred, there is potential to do as much harm as good. The good is represented in the new understandings we might find, the conclusions we can make from data collected, and the decisions we make that positively affect the lives that we live. The harm is the negative side effects of the research that can directly affect the lives of the participants, the researchers, and those that are directly or indirectly affected by the decisions made by the researchers. In the realm of social science, it is paramount that we consider the good and the bad that researchers can cause because of one important element: the vulnerable human subject. The most common way of protecting the human subject is to try to minimize or eliminate the possible harms that might be caused to the subject by considering the subject’s vulnerabilities. Through this ethical stance, I will present an argument that all populations should be considered as potentially vulnerable, and by doing so, researchers can provide two distinct benefits to the participants: (1) increase the welfare of all participants, and (2) decrease the marginalization and stigmatization of vulnerable subpopulations.

Ethical Research Guidelines The Belmont Report provided the outline of how we should ethically conduct research, and systematically provided three of the most important areas to consider when conducting research with human participants: respect for persons, beneficence, and justice (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). In fact, these three fundamental concepts are the basis for what is now the standard practice that all United States research conducted using human participants must follow. The IRB process, one that requires a detailed description of all aspects of projected research projects from start to finish, works as a door between the researchers and the participants. The researchers must show that there is enough evidence that their research has abundant protection of both participants and the researcher (respect for persons), will minimize the risks and maximize the benefits (beneficence), and will provide lasting positive effects to the communities of those populations being researched (justice). This door must be passed through by all researchers in order to reach the participants, and also works as a much-needed barrier (or exit) for all participants that need a way to protect themselves when they might not otherwise know how to. This door is needed because of the vulnerabilities of any participants that may

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arise when researchers talk to, relate with, observe, and collect data from them. Furthermore, the IRB process defines how researchers should deal with those individuals that have a diminished role in their ability to exit, or keep shut the metaphorical door between themselves and the researcher. These participants are labeled, categorized, and defined as vulnerable populations. The vulnerable populations of interest to the IRB process are defined as individuals who experience diminished autonomy, protection, and legal status (among a multitude of other aspects). These populations are protected with an extra lock on the metaphorical door between the researcher and participant. These populations are defined as children (minors), cognitive disabled persons, prisoners, pregnant women, among others (Liamputtong, 2007). The role of protecting these populations has been widely deliberated, and for the most part broken down to the selected subpopulations. Cognitively disabled, pregnant women, children, and prisoners have specific guidelines to follow to protect their mental and physical safety (Aday, 2001), and those groups of individuals with an increased probability for mental disabilities, such as homeless persons, have strict guidelines to follow to protect the welfare of their ability to help protect themselves (Aday, 2001; Gelberg, Andersen, & Leake, 2000). These vulnerable subpopulations need protection, researchers need to reassure that they will be protected, and guidelines like the IRB process need to protect the fundamental process to protect them.

Questions? Yet, I cannot help but wonder whether or not we are protecting everyone. Are there populations that are being left out or situations we cannot anticipate? What if someone is not in one of the protected vulnerable subpopulations, but somehow, unknown to the researcher has an increased risk or being harmed by the research? What if the metaphorical door, set up to protect the participant is not seen by everyone? What if the chances that a person from a population that is not considered vulnerable only has a minuscule, one in a million chance of possibly being harmed? What if that one in a million is someone you know, like your son, daughter, mother, or father? Would it change your idea of who should be considered vulnerable? Furthermore, if we label, categorize, and define these subpopulations to the smallest degree possible, do we create a situation where they will be labeled as such forever? Will they always be considered vulnerable? What if a cognitively disabled person does not want to be known primarily for their disability, but just as a person with thoughts, feelings, and experiences just like everyone else? What if a homeless woman wants to be known as a woman, regardless of where she might sleep at night? Can these people not protect themselves much of the time? Do they always need extra attention that will inevitably always shine a spotlight on weakness, even if the attention is unwanted?

Answer: Researchers Consider Every Population as Vulnerable The action of the research process brings at least two people together to share thoughts, feelings, characteristics, and histories; and this action opens the (Continued)

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(Continued) door for vulnerabilities to be seen, observed, recorded, and reported. There are historical reasons why we need to protect people during the sensitive action of research, and these reasons are based on the harm that individuals have received due to the extreme oversight of ethical considerations. Thankfully, we have progressed as researchers and created guidelines to follow that are foundationally based on the ideas of benefiting the participants, while protecting their safety. Furthermore, we have a process that protects those that might be at an increased risk of harm and considers their specific vulnerabilities. However, this process has two flaws that I cannot help but contemplate. First, by considering each specific vulnerable subpopulation, we might also not consider other populations that are not specifically listed as vulnerable. I listed the general vulnerable populations of interest, but does that mean that someone not listed does not have an increased risk of harm? I do not believe that we can ever know the risk of harm of each person, and that if we are to overlook a research project, or a participant because they are not considered “vulnerable,” then we have failed that person. We have failed to protect everyone. The one in a million has a voice, a life, a family, a history that we have not fully protected. Second, if we label each population as a specific subpopulation, we might set a precedent for marginalizing people as no more then what their label is. Now they are only disabled, or homeless; and they must be considered as such regardless of their want to be labeled that way or not.

Consider All Populations as Vulnerable If we are to consider every population as potentially vulnerable, we can increase the welfare of all participants, and at the same time decrease the marginalization of subpopulations. Considering each population as potentially vulnerable will inevitably increase the oversight needed to keep the metaphorical door intact between those that want to conduct research and those being researched. Yet, this idea is to protect everyone, to increase the respect for persons, benefice, and justice of everyone, even the one in a million. The potential reduction of stereotypes and stigmas that we put upon “vulnerable” subpopulations will help us eventually move away from parceling people into defined groups, where they have to be labeled, categorized, and defined. Obviously, there are and will be those that will find this concept unacceptable. Believing I have no right to speak for other populations, and that if we are to consider all participants as vulnerable, then we have ignored the complexities of the people and again have opened the door for harm. We must ensure that if a gay man wants to be heard as a gay man than he has every right to be heard that way, and that he should not be censored as simply a man. To this, I do not yet have the answers, but have poised questions to work with in the future as the role of ethical research evolves with the progression of time. That if we are to set our goals to achieve a perfect world, where equality and fairness is paramount, then we might actually get there someday. Courtesy Tyler Kincaid. Used with permission.

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CREATING AN ASPIRATIONAL RESEARCH ETHICS STANCE Minimalist to Aspirational Ethics Contemporary ethical codes may be somewhat crudely divided into minimalist codes and aspirational positions. Typically, REBs and some scientific community codes are minimalist in nature or what has been called procedural ethics (Guillemin & Gilliam, 2004; Sparkes & Smith, 2014) focusing on aspects of the research design that need to be planned prior to being in the field and not the ongoing, unpredictable relational aspects of research. This is not to say procedural ethics should focus on the deeper aspects of research. These moments should not be and indeed cannot be part of an overall code but, instead, are times when the professionalism and dedication of the researcher to promote the good of humankind are called upon in an aspirational manner. In Table 2.2, I review just a few examples of what Sieber and Tolich (2013) have called scientific community codes in the United States. One may easily see a commitment to the U.S.’s Belmont principles of beneficence, respect, and justice. Part of the process of creating an ethical stance of your own is identifying which scientific community codes you are obligated to adhere to. TABLE 2.2  ■  C  omparison of Discipline Ethical Codes to Belmont Principles

Belmont Report Respect for people Beneficence Justice

American Anthropological Association (AAA) Responsibility to people and animals with whom anthropologists study and work Science and scholarship

American Educational Research Association (AERA)

American Psychological Association (APA)

American Sociological Association (ASA)

Professional competence

Beneficence/ nonmalficence

Professional competence

Integrity

Fidelity and responsibility

Integrity

Professional, scientific, and scholarly responsibility

Integrity Justice Respect for rights and dignity

Professional and scientific responsibility Respect for people’s rights, dignity, and diversity Social responsibility

Source: Adapted from Adams and Lawrence (2015, p. 5).

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Due to the remarkable variability of ethical situations that may occur during research, it is important for researchers to give thought to the stance they wish to aspire prior to conducting research. Ethical dilemmas arising throughout the research process have been called situational ethics, “ethics in practice” and “ethically important moments” (Guillemin & Gilliam, 2004, p. 262). Israel (2015) presents a brief discussion of the need for ethics such as these using the phrase “beyond regulatory compliance” (p. 191). Here Israel makes an important point that social science researchers have allowed the creation of enforceable, procedural ethics to remain largely out of their hands and are complying, grudgingly in some cases. What would be more beneficial is to see ourselves as active members of an ethically aspiring research community who can be agents of change. As social scientists, we need to work with regulators to develop resources and review processes that encourage and enhance ethical practices, while sustaining the research we vitally need to conduct with the communities we serve. Aspirational ethics are the highest stance the researcher tries to attain in ethics above and beyond minimal requirements (Magnuson & Norem, 1997; Southern, Smith, & Oliver, 2005). Researchers’ aspirational ethical stances may differ depending on culture, values, and morals, and are judged and processed internally with no mandated checks. Examples of aspirational stances include relational ethics (Ellis, 2007), feminist ethics (Olsen, 2005), virtue ethics (Southern et al., 2005; Sparkes & Smith, 2014), narrative ethics (Schwandt, 2007), covenantal ethics (May, 1975; Schwandt, 2007), ethics in practice (Guillemin & Gilliam, 2004), caring ethics (Gilligan, 1982; Noddings, 1984), and an understanding of situational ethics (Guillemin & Gilliam, 2004). See Israel (2015) and Sparkes and Smith (2014) for a current, clear, and comprehensive presentation of many of these types of ethics. See Box 2.2 for an app that offers guidance with some of the many ethical theories and decisions.

BOX 2.2.  THERE’S AN APP FOR THAT! Maria Lahman No, I am not kidding, there is. Out of the numerous ethics apps that are offered, most are either every day value related, religiously based, or field specific (e.g., medical, lawyer). However, the app Ethical Decision Making created by Kirk Hanson, a professor at Santa Clara University, and the director of the Markkula Center for Applied Ethics, has some utility for human researchers. Notably, the app allows one to explore ethics under major theories such as utilitarian ethics or virtue ethics. Importantly, it is FREE. The app bears the following description:

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Facing a tough decision? Work through your options with a framework for making an ethical decision. The Markkula Center for Applied Ethics framework has been viewed more than a million times on the Web. It will help you: – Identify the people who have a stake in your decision
 – Consider your options through five different ethical perspectives
 – Weigh different approaches
 – Score different potential decisions (https://itunes.apple.com/us/app/ethical-decision-making/id799710217?mt=8) At the time of this writing, the app had only three ratings, which unhelpfully range from 3 stars to 5. One may read more about the ethical center the app is generated from at www.scu.edu/ethics/.

WHY CREATE YOUR OWN ETHICAL STANCE? In this text, I make the case for creating a personal ethical research stance that springs from a foundation of mandatory ethical codes such as federal mandates/ discipline codes (e.g., APA), and personal aspirational beliefs. After your research has been approved by the university REB and you move into the phase of actually conducting research, that is when ethical situations will begin to arise. Hopefully, the ethical situations will mostly be of the nature the ethics board would not wish you to report such as seen in Box 2.3. The researcher is reflexively considering the issues of identity, labeling, and if or when to share her beliefs with participants, she may do so with colleagues, mentors, and even the participants. This issue is not one that REBs or procedural ethics cover. Situations that need reporting typically have to do with potential, imminent, or past physical and/or mental harm. A well thought out personal aspirational ethics stance that is flexible and allows room for growth as a researcher helps you to be prepared prior to being in the field. With this type of stance in place, you will know how you hope to be responsive and what resource you can draw on when you are unsure how to respond, or the response you have had is not well received, or has unanticipated consequences.

Beginning to Create an Ethical Research Stance A helpful first step when thinking about an ethical stance is taking time to consider what personal and formal experiences and influences have brought you to the beliefs you hold about what is good and bad. At the end of each chapter I provide

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BOX 2.3.  RESEARCH ETHICS VIGNETTE Katrina Rodriguez During research I conducted with focus groups of women identifying as Latina, Chicana, Mexican-American, and Hispanic, a discussion of ethnicity ensued. When speaking about their views on labels of self-identity within the Latina/o community, participants vocalized. Jo:

“I’m sure no one at this table will be using the term Hispanic.”

Yesy: “I don’t understand why people say Hispanic. There is no Hispania people!” Leneise: “I took a class where I learned that Hispanic is a U.S. coined term. I choose Hispanic because I think we are all connected by color, background, and language.” Elizabeth: “I try to avoid using the term Hispanic; however, I feel that sometimes it’s necessary because that’s what others will understand more easily.” According to participants, each ethnic label has socio-political and sociocultural explanations. For instance, many participants were especially opposed to the term Hispanic because it was adopted for government use for the 1970s Census and because the term falls within the legacy of Spanish colonization of the Americas (Torres, 2004). As a researcher who is a Mexican-American female, I wondered if I should insert myself into this discussion. Certainly, I have strong feelings on the topic and can trace the trajectory of my thoughts and feelings about labels and how these have changed. What is potentially gained or lost when a researcher reveals her experiences and beliefs to participants? Lahman, M. E., Geist, M., Rodriguez, K., Graglia, P., Deroche, K. (2011).

reflexive questions to assist with this process. Examples of these could include culture, personal identities, family, education, books, religion, and spiritualism. For me, all of my training in early childhood education and child development encouraged me to try to identify what was right and good when working with a family and supporting the family in those endeavors. As one can see, a lot of judgment is occurring here since who decides what is right, good, and working well? A cultural model will compel researchers to consider what is right and good outside of their social norms. I feel I am fortunate to have had early childhood educator mentors like my mother, Ann Kathryn Eby, and early childhood educator Naomi Krall who could not only articulate this value, but also exemplified it

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in their daily practice. Much of early education can be said to be the enforcing of and honoring of middle-class, White women’s values. Mom and Naomi helped me see the good in cultures diverse and even oppositional from the ones in which I grew up. This leads to a second step. What is right, good and working well in the cultures you study and the participants who are nested in those cultures? As part of my personal connection to the broader field of ethics, I also considered how fundamental stories are to who I am. My mother grew up in East Africa and was an incomparable story teller. Her stories could be both amazing and frustrating if you wanted a simple yes or no answer to a question. My mother’s tales of East Africa and being Mennonite spun daily counter culture and stories of resistance for me. These tales fit well with how Nigerian author Adichie (n.d.) contends that the hearing of many tales points to the truth. If we hear only one version of a story we are being led with blinders on. Adichie illustrates her point by describing the single narrative, many people have about Africa as a story of deprivation and catastrophe and not the ones of richness and potential my mother told. Third, identify the REB and scientific community codes you must adhere to in order to be a reputable researcher. For me these would be the United States’ IRB, American Education Research Association, National Association of Education for Young Children, and additionally I am strongly, influenced by the United Nations Convention on the Rights of the Child. Immerse yourself in these codes to the extent that you truly know the principle. Then you should be in a position to critique the codes. What seems to work? What is missing? Does the code take into account cultural complexity or is it bound to a dominant culture belief system? If the area you research does not have a code why might that be? How might you contribute to a research community group beginning to engage with ethical issues and developing a code? Fourth, read about aspirational ethical codes that exist and ethical dilemmas researchers have had. In this textbook and others, I reference many examples and resources that are available. Consider collaborating with a group of colleagues who are interested in this topic and begin to create an ethical stance. At this stage, I presented the stance that follows to many different groups from formal to informal and sought feedback on what made sense, lacked clarity, or seemed to be a weakness to them. This collaboration was invaluable to the development of my working ethical stance. I use the word working since I seek ways to enhance and refine my thoughts in an effort to always be becoming.

EXEMPLAR OF AN ASPIRATIONAL ETHICS STANCE As I began to immerse myself in procedural ethics as an IRB chair and research professor, out of the many frustrations I had I started to create an ethical stance

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for my research that became more formalized into a framework. My graduate work was centered around the topic of caring teachers in early childhood education and drew heavily on Noddings (1984). Thus, an ethic of caring as a primary frame of CRRRE emerged. As a researcher, if I care, I want to be culturally responsive, relational, and reflexive. I was also highly influenced by Ellis’s (e.g. 2001, 2007) willingness to share her research uncertainties and missteps and tried to use this teaching tactic with my own students. This meant I engaged deeply with Ellis’s (2007) work in relational ethics. Finally, throughout all of my degrees in education and child development, the importance of knowing my own contexts and deep respect for others’ contexts were woven throughout the curriculum. The idea that resonated most with me was cultural responsiveness (CR) (Villegas & Lucas, 2002a, 2002b). Cultural responsiveness seemed to capture the sense that we can try, we must try, but we may fail and try again. My understanding of CR is one of being open, aware, a listener, a learner, and willing to live in tension with ideas that we are unsure of. Culturally responsive people acknowledge the researcher cannot know everything and is open to learn from others.

BOX 2.4.  RESEARCH ETHICS VIGNETTE (In this research vignette, the researcher wishes to remain anonymous. This vignette highlighting researcher responsivity is a good example of how all researchers can use CRRRE or aspirational ethical stances.) When I was a graduate student, I was a part of study where a survey of student satisfaction was administered to over 400 students within a school setting. I was responsible for the design and implementation of the survey. In an attempt to reduce the inherent power differential that occurs when a researcher administers a survey to a marginalized group of participants, I trained a cadre of students from the school to administer the satisfaction survey to a stratified random sample of their peers in both group and individual settings. After a few months, administrators and the researcher alike noticed members of the student survey group displaying advanced leadership skills. As a result of these observations, administrators requested an additional qualitative investigation of student leadership development through research involvement. In tune with the CRRRE framework, I was aware of the inherent ethical issue in my personal/ professional relationship with the cadre members of the student research group since I had trained them for the original survey administration. Therefore, a different graduate level intern conducted the individual semi-structured interviews of the student research group participants. However, because the intern was not familiar with qualitative methods, I still managed, coded, and had access to all data, which was clearly stated in the consent/assent forms. At the time, I rationalized this decision based on the potential benefits of understanding the dynamics of a

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student research group, although retrospectively I feel I should have declined to manage the qualitative study. Midway through the study, I received a troubled call from the intern who had just completed an interview. The intern explained one of the student participants was frustrated with the student research group and the original survey administration. Based on this discussion, I immediately listened to a recording of the student’s interview, who I will call Mark. Mark was upset with members of the student research group and stated his emotional well-being was affected. While upset with a number of issues, it was Mark’s frustration with his peers’ lack of fidelity to the satisfaction survey research design that was most alarming. Mark stated he observed and confronted other members of the student research group who had administered surveys to anyone they could find as opposed to the students previously selected in the random sample. Mark described his repeated attempts to share this information with school administrators, which resulted in “being completely ignored.” He was told, “Don’t worry about it, we’ve got it under control” and “Mark, if you have any other concerns, just come to me and I’ll address them for you,” comments that made him feel belittled. I considered the information received from Mark’s interview. First, the satisfaction survey results seemed to be based on a convenience sample rather than the intended stratified random sample. However, because the information was shared in a confidential interview, how to act on this knowledge became an ethical dilemma. More importantly, Mark felt emotionally distressed by the events that occurred during the research process and, although not directly mentioned, I may have allowed his distress to occur under my oversight. After dialogue with other researchers, a review of ethical guidelines, and reflexive consideration, I determined Mark’s well-being was the most pressing issue. I was also emotionally affected by this situation and reconsidered my value as a researcher and whether to continue pursuing this type of research. Lahman, M. E., Geist, M., Rodriguez, K., Graglia, P., Deroche, K. (2011).

Culturally Responsive Relational Reflexive Ethics In the following section, I describe Culturally Responsive Relational Reflexive Ethics (CRRRE), an ethical stance I initially developed and then extended with coauthors (Lahman et al., 2011). In order to develop the stance and receive feedback I have presented it numerous times to colleagues and students who as researchers represent the breadth of possible research designs and social science disciplines. I assert aspects of CRRRE are applicable to all human researchers and research. By using the term CRRRE, I am suggesting a stance that acknowledges as researchers, we will not be able to fully understand the perspective of the varied cultures with whom we interact as well as the need to be flexible and open to examining ethical issues from the perspective of the participants to the extent possible. When we conduct research across diverse cultures, people’s expectations may be vastly different or, conversely, when we assume expectations will be different in detail, they may be fundamentally the same. Most people want to be

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treated with respect and in a moral manner. While the three Rs are interrelated and would be integrated in practice, in the following sections and for the sake of discussion, I will consider each of the three Rs of ethics separately.

Culturally Responsive Ethics CRRRE researchers are culturally responsive. Culture is a construct that cannot be easily comprehended because we ourselves are immersed in culture at all times and cannot separate ourselves from it (Cole, 1988; Schwandt, 2007). Culture has been described as “the shared beliefs and values of a group of people that are thought about and acted on” (Lahman & D’Amato, 2007, p. 181). Culture is not “an objectified, self-enclosed, coherent thing or object” or “learned by observing and documenting but something that is inferred” (Schwandt, 2007, p. 59) and includes traditions, rituals, ways of life, and customs. When we are culturally responsive (Villegas & Lucas, 2002a, 2002b), we must first be aware of the cultures in which we are personally embedded and then attempt to understand others’ cultures. Culture is more than the beliefs of a particular group; it is also located within constantly shifting contexts of meaning embedded within historical, social, economic, and political practices (Johnson et al., 2004). It is at the intersection of the varieties of contexts in which individuals are nested. This may include but is not limited to race, ethnicity, citizenship, gender, class, sexual orientation, ability, and age. This notion, seen as varieties of person, attempts to illustrate human lives as delightfully varied and complex with people who hold similar characteristics possibly differing from one another (Davis, 1998; Lahman, 2008). “The process of carefully testing assumptions and open-mindedly revising one’s understanding in the light of new information is essential for learning about cultural ways” (Rogoff, 2003, p. 30). This is an engaged, responsive process. The ideal of being responsive within research ethics brings to the meaning of the word “response”—an added sense of urgency and positivity, as in the dictionary definition of responsive, which engenders “reacting quickly, strongly or favorably to something” (“Responsive,” n.d., Encarta), also “sympathetically” (“Response,” 1983, p. 1055). Noddings (1984) extended these basic definitions saying, A caring response involves stepping out of one’s own personal frame of reference into the other’s. When we care, we consider the other’s point of view, the other’s objective needs, and what he expects of us. Our attention, our mental engrossment is on the cared-for, not on ourselves. Our reason for acting then, have to do both with the other’s wants and desires and with the objective elements of his problematic situation. (p. 24) In culturally responsive teaching, “all students are sensitively accommodated and thus learn successfully” (Le Roux, 2001, p. 41). Similarly, a culturally responsive researcher attempts to sensitively accommodate participants and thus

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enhances the possibility that trustworthy information can be exchanged successfully. Being a culturally responsive researcher involves the following values based on Farmer, Hauk, and Newmann (2005): (a) “explicit recognition, valuing, and discussion” of cultural differences (p. 61); (b) validating the world-views of participants; (c) explicitly discussing power differentials; and (d) acknowledging nontraditional research methods may work better with participants of differing cultural values. In addition, cultural responsiveness includes an affirming attitude toward cultural differences (Villegas & Lucas, 2002a, 2002b), and an understanding that individuals’ conceptions of culture are “deeply embedded into the fabric of the social, economic, political, and structural institutions of the society of which these individuals were socialized” (Banks, 1996, p. 66). On a practical level, being responsive means providing “ongoing information as it becomes available, even when it requires the use of appropriate and judicious researcher self-disclosure” (Etherington, 2007, p. 614). A researcher whose stance is grounded in CRRRE will not shy away from such responsive actions.

Relational Ethics CRRRE researchers are relational. The construct relational has been described by Ellis (2007) as recognizing and valuing “mutual respect, dignity, and connectedness between the researcher and researched, and between researchers and the communities they live and work in” (p. 4). Relational researchers “hold relational concerns as high as research” (Ellis, 2007, p. 25). Relational researchers balance their research with their “obligations toward, care for, and connection with those who participate in our research” (Etherington, 2007, p. 614). Built on this foundation, CRRRE researchers “seek the good” (Ellis, 2007, p. 23), build trust, and exercise an ethic of care. Relational researchers have been said to seek the good. This statement, meant to be pondered, is supported by Lawrence-Lightfoot’s (2000; Lawrence-Lightfoot & Hoffman, 1997) extensive writing in this area. What the “good” is must be guided by basic principles enacted differently depending on the context of the ethical situation. Ellis (2007) gives a series of suggestions on how to seek the good and be a relational researcher: understanding REBs are not the end of ethics; discussing research with others; practicing “process consent” (Munhall, 1988); considering if good justifies risk; letting participants read researchers’ work; when writing, describing instead of labeling or judging; “hold[ing] relational concerns as high as research” (p. 25); and finally, attempting a stance of care. Molyneux, Peshu, and Marsh (2005) noted trust is a basic component of relational research and examined trust in relation to biomedical research. Trust is a “relational notion, describing a voluntary relationship between two or more people” (Molyneux et al., 2005, p. 1463). The authors go on to encourage the establishment of participant trust and researcher respect for healthy mistrust by participants in research relationships. While trust will not prevent problems, they believed holding this relational stance from the outset of the research process

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will assist in working with problems as they occur. Healthy mistrust is described as participants actively attempting to understand the research process and not simply signing over their rights in ignorance. The authors pointed out a relational stance is an internal ethical stance that cannot be regulated by governments or boards, which relates directly to the idea of aspiration and CRRRE. Being relational is related to care and feminism (Noddings, 1984, 1988, 1992; Olsen, 1994, 2005) such that “relationships with participants lie at the heart of feminist ethical concerns” (Olsen, 2005, p. 255). In the tradition of Gilligan (1982), CRRRE researchers want to engage with participants’ different voice(s). By caring ethics, I mean a theoretical stance that emphasizes reciprocal relationships, recognition, growth, and responsiveness enacted through applied care giving. An ethic that emphasizes relations or care does not mean a rejection of all other ethics. Instead, it may become the frame on which researchers construct their ethical stance as “it demands instead that the search for just outcomes to ethical problems takes account of care, compassion, and our interpersonal relationships, and ties to families and groups” (Israel & Hay, 2006, p. 22).

Reflexive Ethics While reflexivity is arguably one of the most important constructs in qualitative research, I feel all researchers, regardless of paradigm, would benefit by conducting research from a reflexive stance. Reflexivity as discussed here is an optimistic, activist construct that in research has been said to be an ongoing conversation about experience while simultaneously living in the moment. . . . Reflexivity, then, is ubiquitous. It permeates every aspect of the research process, challenging us to be more fully conscious of the ideology, culture, and politics of those we study and those we select as our audience. (Hertz, 1997, p. viii) Finlay and Gough (2003) added, The root of the word “reflexive” means to “bend back upon oneself.” In research terms, this can be translated as thoughtful, self-aware analysis of the intersubjective dynamics between researcher and the researched. Reflexivity requires critical self-reflection of the ways in which researchers’ social background, assumptions, positioning behavior impact on the research process. (p. ix) Therefore, if reflection is seen as occurring after an experience, reflexivity occurs before, during, and after an experience, such that it “becomes a continuing mode of self-analysis and political awareness” (Callaway, cited in Hertz, 1997, p. viii). To engage with issues in a reflexive manner, researchers are encouraged to keep a researcher journal where they reflect on happenings in the field (Janesick, 1999) and to dialogue with colleagues and mentors.

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Etherington (2007) suggested reflexivity applied to ethics has many facets. In the case of CRRRE, a researcher is sensitive to the interactions of self, others, and situations. This sensitivity is not dissimilar to reflexivity in counseling that relies on “an ability to notice our responses to the world around us, to stories, and to other people and events, and to use that knowledge to inform and direct our actions, communications, and understanding” (Etherington, 2007, p. 599). A reflexive researcher notices the reactions to a research situation and adapts in a responsive, ethical, moral way where the participant’s dignity, safety, privacy, and autonomy are respected. Additionally, the researcher pays special attention to the possible power imbalances between the researcher and the participants. Finally, reflexive researchers use their writing as a tool to be transparent so their “work can be understood, not only in terms of what we have discovered, but how we have discovered it” (Etherington, 2007, p. 601). Attention to these influences provides reflexive researchers the opportunity to look at the research process and critically view their own role and actions (Guillemin & Gillam, 2004). In qualitative research, reflexivity is used to enhance the trustworthiness of the study (Hertz, 1997). Reflexivity can be a way to examine the complete research process and a vital procedure for enhancing validity. In quantitative research, although not explicitly stated as such, researchers are reflexive when paying attention to issues that influence validity such as history and maturation effects. This type of reflexivity improves the quality, trustworthiness, and/ or validity of the inferences made. In this sense, reflexivity is related to “knowledge creation” (Guillemin & Gillam, 2004, p. 275), or what I would call ethical knowledge creation.

Eight Strands of Culturally Responsive Relational Reflexive Ethics: The Stance in Practice Culturally responsive teaching includes six strands in the teacher–student educational relationship (Villegas & Lucas, 2002a, 2002b). Shifting this perspective from teaching to research ethics, I changed the terms teacher/student to researcher/participant. In addition, I added two strands from the literature on relational research (Ellis, 2007; Lawrence-Lightfoot & Hoffman, 1997) and reflexivity (Finlay & Gough, 2003; Hertz, 1997). Therefore, CRRRE in research may be said to have the following eight strands (see Table 2.3) where the researcher (a) is socio-culturally conscious; (b) is able to operate from an asset-based framework seeing all participants’ backgrounds as opportunities for research; (c) sees herself or himself as a change agent responsible for creating environments for all participants to be successfully heard; (d) is able to creatively navigate varied participants’ communication styles and preferences in order to co-construct knowledge; and (e) utilizes individual participants’ stories to expand and build their research knowledge base and acknowledges the personal perspectives of her or his identity. Additionally, a researcher with a culturally responsive, relational research ethic (f) seeks the good through research; (g) is reflexive throughout

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the research process; and (h) cultivates culturally responsive, relational reflexive research practices. CRRRE researchers are focused on creating research environments that best meet the participants where they are and allow for new ways to understand and co-construct knowledge. An assumption inherent in the eight strands of CRRRE is all researchers can adopt or incorporate aspects of the strands into their own inquiry. CRRRE may be enacted differently depending on the researcher, research topic, participants, and research design; however, for all researchers regardless of methodology, this TABLE 2.3  ■  T  he Eight Strands of Culturally Responsive Relational Reflexive Ethics Informed by Culturally Responsive Teaching Culturally Responsive Relational Reflexive Ethics

Culturally Responsive Teaching

Gaining socio-cultural consciousness

Gaining socio-cultural consciousness

Developing an asset-based framework by seeing all participants’ backgrounds as opportunities for research

Developing an affirming attitude toward students from culturally diverse backgrounds

Developing the commitment and skills to act as agents of change responsible for creating environments for all participants to be successfully heard

Developing the commitment and skills to act as agents of change

Creatively navigating varied participants’ communication styles and preferences in order to co-construct knowledge

Understanding the constructive beginnings of culturally responsive teaching

Utilizes the individual participants’ stories to expand and build research knowledge base and acknowledges researcher perspectives

Learning about students and their communities

Committing to seek the good through research (Ellis, 2007) Employing reflexivity throughout the research process (Finlay & Gough, 2003; Hertz, 1997) Cultivating culturally responsive relational ethical research practices

Cultivating culturally responsive teaching practices

Source: Extended from Villegas and Lucas (2002a, 2002b).

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stance is primarily about who we are as researchers, what goals we set for our research, and a commitment to the primacy of the research participants and process being valued over outcomes. For instance, in an experimental design, much of the obvious influence of CRRRE will take place prior to the design’s implementation through attempts to understanding the culture of the sample one plans to work with, designing the experiment accordingly, and examining the nature of the biases we inherently bring to research as relatively privileged academics. Conversely, in naturalistic research, CRRRE may be obvious throughout the entire research process. In the following sections I elaborate on each strand. Socio-cultural consciousness.  In the first strand, CRRRE researchers strive to be socio-culturally conscious, meaning cognizant and fully mindful that participants may have different, multiple, and conflicting perspectives about reality, society, power, and knowledge (Ladson-Billings, 2004) than the researchers or other participants. These ideologies are influenced by one’s position in society and are shaped by factors such as race/ethnicity, social class, age, gender, sexual orientation, native language, as well as life’s experiences in general (Ladson-Billings, 2004; author; Villegas & Lucas, 2002a). Asset based.  The second strand of CRRRE is the ability to operate from an asset-based framework by viewing all participants’ backgrounds as opportunities for research. An asset-based perspective emphasizes that dominant White, male, middle-class, adult, heterosexual, abled, Christian values, while valid, are not inherently superior (Tatum, 1997). Cultural differences in areas such as “thinking, talking, and behaving” (Villegas & Lucas, 2002b, p. 36) are not considered problems but are seen as opportunities for new understandings. A researcher who visits the home of participants of another culture will want to conduct background research to be aware of customs the researcher may wish to anticipate such as a possible need to accept food and drink when offered. The researcher may then want to ask questions about the specific person’s culture as part of respecting and valuing other perspectives. This keeps interaction from becoming stereotypical, as seen in the preceding examples, since within each larger culture, a person’s personal beliefs and customs may be profoundly different. Change agent.  The third strand of CRRRE necessitates researchers see themselves as change agents responsible for creating environments for all participants to be heard. The emphasis is on researchers creating environments that encourage all participants, no matter their culture, ability, language, reading level, etc., to participate successfully in the research. For instance, researchers have written extensively about changing focus groups to be culturally appropriate. The traditional focus group setting will not be comfortable to all people. Methodological suggestions include use of food, dialogue, comfortable chairs, décor, and understanding natural speech patterns (Allen, 2006; Madriz, 2002; Morgan, Gibbs, Maxwell, & Britten, 2002; Rodriguez, Schwartz, Lahman, & Geist, 2011).

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Co-construction.  The fourth strand encompasses creatively navigating varied participants’ communication styles and preferences. Researchers have suggested certain groups such as youth (DeRoche & Lahman, 2008), children (Nespor, 1997), and groups deemed vulnerable (Liamputtong, 2007) may benefit from alternative modes of data collection (e.g., journals, drawing, photos, video, enactment). Examples from photo methodology include photo elicitation (Harper, 1994, 2000, 2005) and Photo Voice (Wang & Burris, 1997), where researchers use photos to help draw out or elicit information from participants or alternatively seek to empower participants by putting cameras in their hands to document experience. Storied lives.  In the fifth strand, personal stories of participants are utilized to expand and build the research knowledge base. Explicitly acknowledging the personal stories of participants is a major tenet in qualitative research. I also believe that by incorporating a qualitative portion into a quantitative study, traditionally known as pre-research, it is possible to understand on a deeper level subsequent data generated. Equally important in strand five is acknowledging the personal stories or perspectives of the researchers, which can be attempted through discussing research goals and biases with fellow researchers, reflexively journaling (Janesick, 1999), and including the “researcher stance” portion for certain articles. However, it is appropriate, particularly in critical or feminist research, for researchers to share their story or perspective with the participant. Given the use of the word “storied,” this strand initially seems more conducive to qualitative researchers and is indeed part of the qualitative tradition. However, all researchers have experiences, whether or not we choose to refer to them as “stories.” I argue that quantitative researchers acknowledging, at least in their conversation and methodological writings, what their stories are may create more robust research. Seek the good.  CRRRE researchers seek the good through research. Ultimately, this means CRRRE researchers are conducting research that is valuable to society in the following ways: by promoting equity, understanding behavior by improving services, and by valuing participants over the results. Reflexivity.  Being reflexive throughout the research process characterizes the next CRRRE strand. Positive reflexivity involves an examination of the researcher’s practice as related to previous strands. It does not include narcissism or wallowing in one’s own musing. Reflexivity involves a continued contemplation while in the research process in order to improve it. It is recommended this occur not in isolation but in relation to other researchers as we read professional methodological accounts, dialogue with colleagues, and consult with student researchers and clients. Cultivate Culturally Responsive Relational Reflexive Ethics practices.  The last strand of CRRRE is a commitment to cultivating culturally responsive, reflexive,

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relational oriented research practices or an integration of all of the strands. This comprehensive category is described in detail using ethical examples. By using the term CRRRE, I am suggesting a stance that acknowledges we as researchers will not be able to fully understand the perspective of the varied cultures with whom we interact as well as the need to be flexible and open to examining ethical issues from the perspective of the participants to the greatest extent possible. When we conduct research across diverse cultures, people’s expectations may be vastly different or, conversely, when we assume expectations will be different in detail, they may be fundamentally the same. Most people want to be treated with respect and in an ethical manner. In closing, as readers negotiate the following sections of the book, they will want to keep the CRRRE framework in mind as a possible model as they begin to build or add to existing ethical stances of their own. Considering questions provided at the end of each chapter either in small groups or through journaling will help lay the ground work for an aspirational ethical stance of one’s own and toward becoming.

Reflexive Questions 1. Other in research •• Whom have you Othered? •• Who Others you? •• Can research be conducted without Othering? a. If so, how? b. If not, how might Othering be reduced? 2. Vulnerability in research •• Which stance might you take, and why (see Box 2.1 by Kincaid)? a. Some groups are vulnerable. b. Vulnerable groups should be seen as capable and competent yet vulnerable. c. All people are potentially vulnerable. d. What are other possible stances in regard to vulnerability in research? Instructor note: This question works well as a classroom debate. You may put the class into three groups according to their beliefs or into groups where they must argue for a stance they do not believe in. See Appendix F for course activities.

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3. Ethnic/racial labeling research ethics vignette in Box 2.3 •• How do you label yourself regarding race and/or ethnicity? •• How do others label you regarding race and/or ethnicity? •• What other labels do you use to identify yourself, as in intersecting identities? (e.g., single, middle class, runner, dad) •• What connotations do these labels have for you? What may these labels connote for others? •• Identify which of your labels others may find “visible” or “invisible.” •• Importantly, how might your identities impact the research you conduct? 4. Socio-economic information is a vital part of research participants’ descriptions in a research design, sampling plan, or final research report. •• How do you determine who to attempt to sample in your research? •• How do you label participants socio-economically in your research? •• Where do you derive these labels from? •• What might be possible impacts of a researcher’s choices in this area? 5. For Box 2.4 titled “Research Ethics Vignette,” discuss the questions below. •• What ethical dilemmas do you identify in this situation? •• How was or was not the researcher responsive? •• What might you do to address this situation in an ethical manner? 6. What research ethics codes are you required to follow (e.g., federal, discipline)? •• How do these codes compare and contrast? •• What aspects of the codes appeal to you? •• What areas do not make sense? •• What areas do you believe need to be added, updated, or expanded on? •• When are you required to make formal ethics reports to the ethics research board? 7. Culturally responsive relational reflexive research ethics •• What might be the participants’ you research primary identities? •• What might be the participants’ you research secondary identities? •• How do the participants’ identities inform their unique communication and/or relationship characteristics that are important to acknowledge within this research?

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•• What are the naturally occurring contexts the participants already share? •• How might a researcher create and/or join a context that feels comfortable and affirming to participants? •• How does a researcher best explore and identify his or her primary and secondary identities? •• It has been posited that, by first knowing our own identities, we may know others better. Why might this be?

Resources Othering Thornbury’s blog on English language teaching offers an interesting example of Othering in the area of rhetoric and literary genres also using examples of scientific writing style: https://scottthornbury.wordpress.com/2012/04/08/o-is-for-othering/

Culturally Responsive Most resources on the construct culturally responsive are about pedagogy. These are well deserving of attention and easily transferable to a research context. The following book is foundational: Villegas, A. M., & Lucas, T. (2002). Educating culturally responsive teachers: A coherent approach. State University of New York Press.

Vulnerable Participants An excellent text by Liamputtong (2007) was groundbreaking in the area of vulnerable people in research. I have used this text to help me think about many of the ideas I present here. Liamputtong, P. (2007). Researching the vulnerable. London: Sage. Gelberg, L., Andersen, R. M., & Leake, B. D. (2000). The behavioral model for vulnerable populations: Application to medical care use and outcomes for homeless people. Health Services Research, 34(6), 1273.

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3 RESEARCH ETHICS HISTORY Regulations and Beyond We deeply regret that it happened, and we apologize to all the individuals who were affected by such abhorrent research practices. The conduct exhibited during the study does not represent the values of the United States, or our commitment to human dignity and great respect for the people of Guatemala. —Secretary of State Hillary Clinton and Secretary of Health and Human Services Secretary Kathleen Sebelius (2010)

W

hen I give presentations on human research ethics and ethical oversight groups such as the U.S. Institutional Review Board (IRB),1 I ask the audience to share how they would describe IRB. Responses have included “picky, tedious, rule bound, irritating, Big Brother-ish,” and, strikingly, “IRB is from hell.” Given the perceived desire of the research community to conduct ethical research with appropriate, yet minimal supervision or intrusion (Howe & Doughtery Cutts, 1993; Israel, 2015; Israel & Hay 2006; Katz, 2006; Lincoln & Tierney, 2004; White, 2007), how contemporary research ethical codes developed and what

1  A few sections from this chapter while revised and updated, such as the history of research ethics, appeared in an earlier journal article, Lahman, M. K., Geist, M. R., Rodriguez, K. L., Graglia, P., & DeRoche, K. K. (2011). Culturally Responsive Relational Reflexive Ethics in research: The three Rs. Quality & Quantity, 45(6), 1397–1414.

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ethical stance we should aspire to today are important issues to consider. Therefore, toward this end, I briefly review the history of Western ethics, highlighting two research studies that were formative for the United States’ current regulations: the Tuskegee Syphilis Study and the Stanford Prison Study. I also detail later breaking information on the Guatemala Syphilis Study lest people new to this history think the Tuskegee Study was an anomaly. To help bring this history alive, first-person narratives are shared, when possible, from people involved in these studies. I also highlight principles of the Belmont Report, current ethical research boards in several countries, and changes afoot for the U.S. IRB.

A BRIEF HISTORY OF CONTEMPORARY WESTERN RESEARCH ETHICS “Grub first, then ethics.” —Bertolt Brecht The narrative2 of research ethics is marked by moments of disgrace as society reacts retrospectively to events that should have been prevented. If one is generous, this history may be seen as the result of naiveté on society’s part where the citizenry trusted authority figures. If one uses a critical perspective, there are deeply concerning implications of racism (Gray, 1998; Greenwald, Ryan, & Mulvihill, 1982; Hornblum, 1998; Washington, 2006), classism (Gray, 1998; Hornblum, 1998), sexism (Liamputtong, 2007; Sherwin, 1994), heterosexism (Humphreys, 1970, 1972; Liamputtong, 2007), and power (Greenwald et  al., 1982; Hornblum, 1998; Liamputtong, 2007) as society benefited from the unethical research performed on Others. Tyler, in the full version of his human research ethical stance excerpted in Box 2.1 says, It would be wonderful to provide a detailed list of the history of research ethics as episodes of absolute embracement by researchers attempting to protect the lives, dignity and welfare of the participants, but sadly this is not true. For the most part, research ethics have been a lesson in learning from failure, and not of success. This concept of learning good due to those who have caused harm is problematic and is first exhibited in the Nazi trials.  The word narrative here is a reminder that history is a story told to us and for certain reasons. History is not a fact, but instead many interwoven and layered interpretations. Some have been writing counter stories of typically narrated research ethics history readers may wish to engage with while keeping in mind atrocity narratives. One call for a counter story is heard from Tolich (2014) who asks nonmedical, nonpsychological scientists, such as myself, to examine their own research history and contemporary work for ethical breaches instead of relying on the medical and psychological list requisite in chapters such as this. 2

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In the West, the need for guidelines dealing with human subjects in research was recognized following the Nuremberg trials (Greenwald et al., 1982) when abuse by Nazi medical doctors, in the guise of research experimentation, during World War II came to the international community’s attention (Rees, 2005; Weindling, 2004). Abused groups included persons who were Jewish, Communist, Roma, differently abled, members of diverse sexual orientation groups, twins, etc. The outcry over these atrocities led to the creation of the Nuremberg Code in 1947—the first legal effort to create an ethical standard for research conduct by outlining basic principles for human experiments (Israel & Hay, 2006). Examples of unethical research in U.S. psychological and social science research are evidenced in notorious studies such as Little Albert (Watson & Rayner, 1920), Milgram’s obedience study (1963), the Stanford prison study (Zimbardo, Haney, Banks, & Jaffe, 1973), and Humphrey’s “Tearoom” study (1970, 1972). These studies assisted in setting the national stage for consideration of participants’ psychological distress, the right to consent/assent, deception when conducting research, and power relations between the researched and researcher. While the ethics of these studies remain questionable, history of U.S. biomedical research has left a legacy of deeply unethical research behavior. In biomedical research, multiple studies are seen today as highly unethical. The Willowbrook Hepatitis study in the 1950s conducted by medical doctors involved coercion and lack of informed consent/assent with children with disabilities (Israel & Hay, 2006). Cells taken from Henrietta Lacks without consent or compensation known today as HeLa cells became the oldest and most used cell line in scientific research (Skloot, 2010). Similarly, the 1963 Jewish Cancer Medical study remains an example of doctors engaging in unethical research involving deception and lack of informed consent with elderly Jewish patients (Israel & Hay, 2006). Due to space constraints, I will only review the Guatemala and Tuskegee Syphilis Studies and Stanford Prison Study in-depth, thus highlighting historically unethical biomedical research and psychological research that frame human research ethics today. I also attempt to use first-person narratives when possible to help these narratives come to life.

Guatemala Syphilis Study “Even the most rational approach to ethics is defenseless if there isn’t a will to do what is right.” —Alexander Solzhenitsyn During the late 1940s, the United States conducted a recently revealed unethical biomedical study termed the Guatemala Syphilis Experiment. The researchers

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performed experimentation on vulnerable people to test the efficaciousness of medications on sexually transmitted diseases (STDs). Approximately 1,308 Guatemalan children, prisoners, psychiatric patients, sex workers, and soldiers, ranging in age from 10 to 72, were deliberately exposed to syphilis or gonorrhea and enrolled in the study without consent. The U.S. military initiated the research hoping to find a way to prevent STDs among their armed forces (“Guatemala syphilis experiment,” 2017). Of note is that the director of the research, Dr. John C. Cutler, U.S. Public Health Service scientist, also served as a leader in the Tuskegee Syphilis Study. Cutler and colleagues collaborated with local Guatemalan physicians and were granted access to public health centers, government hospitals, mental institutions, and orphanages as a result of negotiations with the Guatemalan government (“Guatemala syphilis experiment,” 2017). The Guatemala Syphilis Experiment was revealed to the public in 2010 when historian Dr. Susan M. Reverby, a Wellesley professor, investigated Cutler’s original documents, which had become publicly archived since Cutler’s death. Dr. Reverby, already an expert historian on the Tuskegee study, described herself as “floored” and “blown away” when she unearthed the earlier Guatemala study (Smith, 2010). President Obama called the president of Guatemala and apologized on the behalf of the U.S. government and its people. Guatemalan media wrote, President Alvaro Colom described the experiments as “espeluznantes” (lurid, ghastly, shocking, causing horror) and “Crímenes de lesa humanidad” (crimes against humanity). He vowed to carry out a profound investigation. He also recognized the “Hidalguia” of the White House. Hidalguia is a Spanish word meaning “chivalry”—in this context it would best be translated as “in doing the honorable thing.” (Nordqvist, 2010)

Tuskegee Syphilis Study The Tuskegee Syphilis Study, while occurring after the inception of the Guatemala Syphilis Study (1932–1972), lasted much longer and was reported to the public far earlier in 1972. The Tuskegee Syphilis Study, likely the most widely known U.S. unethical biomedical study is just one example from a tradition of unethical research conducted on African Americans. This history of unethical research has racial dimensions that might still contribute to the African American community’s general wariness of researchers (Mitchell, 1994; Shavers, Lynch, & Burmeister, 2000; Washington; 2006). African American men were characterized by researchers as members of “a notoriously syphilis soaked race” (Washington, 2006, p. 160) and seen as an opportunity to advance science for the majority community at the extreme risk of the participants. A disturbing legacy of Tuskegee is African American’s oral narrative of distrust of research and medical doctors handed down through families (Shavers, Lynch, & Burmeister, 2000). When I heard of this narrative, it made a deep impression that

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families would narrate topics traditionally seen as scholarly. In my personal life, I have asked African Americans about this narrative, and all have been familiar with it. Thomas and Quinn (2000, p. 235) wrote about the protective research narrative shared to shield families from harm: Tuskegee has become part of the folklore of racism, part of the collective memory of Black people as families retold the story in the oral tradition. It has lain dormant there and contributed to Black people’s mistrust of medical care and public health. This legacy may help explain why African Americans are reluctant to take their medications when they do finally see doctors, why they come in late for treatment, why they suffer disproportionately from many diseases for which there are cures (Gamble, 1997; Guinan, 1993; Jones, 1992, Quinn, 1997).

A Tuskegee Syphilis Study Medical Doctor Speaks3 A 1992 news report offers insight into the behind-the-scenes planning during the Tuskegee study (PrimeTime Live, as cited in Thomas & Quinn, 2000). Schadler, a news correspondent, interviewed Dr. Sidney Olansky, director of the study from 1950 to 1957. During this time, penicillin had become the standard medication for syphilis but was not offered to the study participants. As part of the interview, Olansky was asked if the research could have been performed on White men to which he speculated, “I think it could have been if we’d had White men in the same general category. Say if we had a bunch of hillbillies up in West Virginia that had a lot of syphilis.” Pressed by Schadler about the lies the men were told, Olansky said, “The fact that they were illiterate was helpful, too, because they couldn’t read the newspapers. If they were not, as things moved on they might have been reading . . . and seen what was going on” (p. 235). When read statements from Tuskegee survivors saying they were told research spinal taps they received were actually treatments, Olansky smiled as he replied, “I don’t know what they were told. I mean, sometimes people will say things that they don’t really mean or don’t really believe in order to accomplish something they want” (Thomas & Quinn, 2000, p. 235). In response to a question about why if the government doctors had done nothing wrong, they were no longer trusted by the men, Olansky replied, “Someone got them all heated up. They were easily swayed. They were like a pack of sheep” (Thomas & Quinn, 2000, p. 235). In conclusion, Olansky summarized the Tuskegee research findings saying, “Syphilis isn’t too bad a disease” (Thomas & Quinn, 2000, p. 236).

 I’d like to thank Thomas and Quinn for preserving this firsthand narrative captured by correspondent Jay Schadler since I was no longer able to directly access the PrimeTime footage. 3

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A Survivor Speaks4 Mr. Herman Shaw: On behalf of all the survivors . . . and on behalf of their heirs, [and] my fellow participants who have died, I wish to thank Mr. President Bill Clinton for inviting us to the White House. It has been over 65 years since we entered the [Tuskegee Research] program. We are delighted today to close this very tragic and painful chapter in our lives. We were treated unfairly— to some extent like guinea pigs. We were not pigs. We were not dancing boys as we were projected in the movie, Ms. Evers Boys. We were all hardworking men, and . . . citizens of the United States. The wounds that were inflicted upon us cannot be undone. I am saddened today to think of those who did not survive and whose families will forever live with the knowledge that their deaths and suffering was preventable. Mr. President, we do also want to thank our lawyer [name is inaudible] who has been with us during these 25 years and helped us to make this ceremony as important as becomes the damage done by the Tuskegee Study is much deeper than the wounds any of us may have suffered, but it speaks to our faith in government and the ability of medical science to serve as a force for good . . . in addition to the apology, we want to construct a Tuskegee permanent memorial—a place where our children and grandchildren will be able to see our contribution that we and others made to this country. In my opinion, it is never too late to work to restore faith and trust. So a quarter of a century after the study ended, President Clinton’s decision to gather us here to allow us to finally put this horrible nightmare behind us as a nation is a most welcome decision. In order for America to reach its full potential, we must truly be one America, black, red, white together, trusting each other, caring for each other, and never allowing the kind of tragedy which has happened to us in the Tuskegee study to ever happen again. Mr. President, words cannot express my gratitude to you for bringing us together today, for doing your best to right the wrongs of this tragedy, and to resolve America shall never allow such an event to occur again. Ladies and gentlemen, I give to you the President of the United States of America. (CSPAN, 2015) A President Apologizes5 President Bill Clinton: Ladies and gentlemen, on Sunday, Mr. Shaw will celebrate his 95th birthday. I would like to recognize the other survivors who are here today and their families: Mr. Charlie Pollard is here. Mr. Carter Howard.  Mr. Herman Shaw spoke at the U.S. Presidential Tuskegee Apology. The following are excerpts from his speech transcribed from CSPAN: http://www.c-span.org/video/?81273-1/tuskegee-public-health-studyapology. 5  President Bill Clinton gave the U.S. Presidential Tuskegee Apology for the nation. The excerpts are from his speech transcribed from CSPAN: http://www.c-span.org/video/?81273-1/tuskegee-public-healthstudy-apology. 4

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Mr. Fred Simmons. Mr. Simmons just took his first airplane ride and he reckons he’s about 110 years old. . . . And Mr. Frederick Moss, thank you, sir. I would also like to thank three family representatives who are here. Sam Doner is represented by his daughter, Gwendolyn Cox. Thank you, Gwendolyn. Ernest Hendon, who is watching in Tuskegee, is represented by his brother, North Hendon. George Key is represented by his grandson, Christopher Monroe. Thank you, Chris. I also acknowledge the families, community leaders, teachers, and students watching today by satellite from Tuskegee. The White House is the people’s house; we are glad to have all of you here today. . . . The eight men who are survivors of the syphilis study at Tuskegee are a living link to a time not so very long ago that many Americans would prefer not to remember, but we dare not forget. It was a time when our nation failed to live up to its ideals, when our nation broke the trust, with our people, that is the very foundation of our democracy. It is not only in remembering that shameful past that we can make amends and repair our nation but it is in remembering that past that we can build a better present and a better future. And without remembering it, we cannot make amends and we cannot go forward. So today, America does remember the hundreds of men used in research without their knowledge and consent. We remember them and their family members. Men who were poor and African American, without resources and with few alternatives, they believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed. Medical people are supposed to help when we need care but even once a cure was discovered, they were denied help and they were lied to by their government. Our government is supposed to protect the rights of its citizens; their rights were trampled upon. Forty years ago, hundreds of men [were] betrayed, along with their wives and children, along with the community in Macon County, Alabama, the City of Tuskegee, the fine university there, and the larger African American community. The United States government did something that was wrong—deeply, profoundly, morally, wrong. It was an outrage to our commitment to integrity and equality for all our citizens. To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry. The American people are sorry—for the

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loss, for the years of hurt. You did nothing wrong, but you were grievously wronged. I apologize and I am sorry that this apology has been so long in coming. To Macon County, to Tuskegee, to the doctors who have been wrongly associated with the events there, you have our apology as well. To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist. That can never be allowed to happen again. It is against everything our country stands for and what we must stand against is what it was. So let us resolve to hold forever in our hearts and minds the memory of a time not long ago in Macon County, Alabama, so that we can always see how adrift we can become when the rights of any citizens are neglected, ignored, and betrayed. And let us resolve here and now to move forward together. The legacy of the study at Tuskegee has reached far and deep in ways that hurt our progress and divide our nation. We cannot be one America when a whole segment of our nation has no trust in America. An apology is the first step and we take it with a commitment to rebuild that broken trust. We can begin by making sure there is never again another episode like this one. We need to do more to ensure that medical research practices are sound and ethical and that researchers work more closely with communities. Today, I would like to announce several steps to help us achieve these goals. First, we will help to build that lasting memorial at Tuskegee. The school founded by Booker T. Washington, distinguished by the renowned scientist George Washington Carver and so many others who advanced the health and well-being of African Americans and all Americans, is a fitting site. The Department of Health and Human Services will award a planning grant so the school can pursue establishing a center for bioethics in research and health care. Second, we commit to increase our community involvement so that we may begin restoring lost trust. The study at Tuskegee served to sow distrust of our medical institutions, especially where research is involved. Since the study was halted, abuses have been checked by making informed consent and local review mandatory in federally-funded and mandated research. Still, 25 years later, many medical studies have little African American participation and African American organ donors are few. This impedes efforts to conduct promising research and to provide the best health care to all our people, including African Americans. So today, I’m directing the Secretary of Health and Human Services, Donna Shalala, to issue a report in 180 days about how we can best involve communities, especially minority communities, in research and health care. You must—every American group must be involved in medical research in ways that are positive. . . .

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Third, we commit to strengthen researchers’ training in bioethics. We are constantly working on making breakthroughs in protecting the health of our people and in vanquishing diseases. But all our people must be assured that their rights and dignity will be respected as new drugs, treatments, and therapies are tested and used. So I am directing Secretary Shalala to work in partnership with higher education to prepare training materials for medical researchers. They will be available in a year. They will help researchers build on core ethical principles of respect for individuals, justice and informed consent, and advise them on how to use these principles effectively in diverse populations. Fourth, to increase and broaden our understanding of ethical issues and clinical research, we commit to providing postgraduate fellowships to train bioethicists, especially among African Americans and other minority groups. HHS will offer these fellowships beginning in September of 1998 to promising students enrolled in bioethics graduate programs. And, finally, by executive order, I am also today extending the charter of the National Bioethics Advisory Commission to October of 1999. The need for this commission is clear. We must be able to call on the thoughtful, collective wisdom of experts and community representatives to find ways to further strengthen our protections for subjects in human research. We face a challenge in our time. Science and technology are rapidly changing our lives with the promise of making us much healthier, much more productive, and more prosperous. But with these changes, we must work harder to see that as we advance, we don’t leave behind our conscience. No ground is gained and, indeed, much is lost if we lose our moral bearings in the name of progress. The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair. They had the power to heal the survivors and all the others and they did not. Today, all we can do is apologize. But you have the power, for only you—Mr. Shaw, the others who are here, the family members who are with us in Tuskegee—only you have the power to forgive. Your presence here shows us that you have chosen a better path than your government did so long ago. You have not withheld the power to forgive. I hope today and tomorrow every American will remember your lesson and live by it. Thank you, and God bless you. (CSPAN, 2015)

Zimbardo Stanford Prison Study The Guatemala and Tuskegee syphilis studies are infamous biomedical studies with clearly egregious behavior. The legacy of Tuskegee, due to earlier exposure

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of it, may be seen throughout U.S. IRB regulations, which have been biomedical in nature with minimal understanding demonstrated of other types of human research. I now feature first-person accounts as reported by Romesh Ratnesar 6 of one of the most infamous social science studies—the Zimbardo Stanford Prison Study. Of note is this study occurred after IRBs were created and had the full approval of the Stanford University IRB.

A “Guard”: Dave Eshelman The son of a Stanford engineering professor, Eshelman was a student at Chapman University at the time of the experiment. He was the prison’s most abusive guard, patterning himself after the sadistic prison warden (portrayed by Strother Martin) in the movie Cool Hand Luke. Today, he owns a mortgage business in Saratoga. I was just looking for some summer work. I had a choice of doing this or working at a pizza parlor. I thought this would be an interesting and different way of finding summer employment. The only person I knew going in was John Mark. He was another guard and wasn’t even on my shift. That was critical. If there were prisoners in there who knew me before they encountered me, then I never would have been able to pull off anything I did. The act that I put on—they would have seen through it immediately. What came over me was not an accident. It was planned. I set out with a definite plan in mind—to try to force the action, force something to happen—so that the researchers would have something to work with. After all, what could they possibly learn from guys sitting around like it was a country club? I was in all kinds of drama productions in high school and college. It was something I was very familiar with—to take on another personality before you step out on the stage. I was kind of running my own experiment in there by saying, “How far can I push these things and how much abuse will these people take before they say, ‘knock it off?’” But the other guards didn’t stop me. They seemed to join in. They were taking my lead. Not a single guard said, “I don’t think we should do this.” The fact that I ramped up the intimidation and the mental abuse without any real sense as to whether I was hurting anybody? I definitely regret that. But in the long run, no one suffered any lasting damage. When the Abu Ghraib scandal broke, my first reaction was “this is so familiar to me.” I knew exactly what was going on. I could picture myself in the middle of that and watching it spin out of control. When you have little or no supervision as to what you’re doing and no one steps in and says, “Hey, you can’t do this,” things just keep  My deep thanks to Romesh Ratnesar, Stanford alum, for allowing these firsthand accounts to be reprinted in full here: “The Menace Within,” by Romesh Ratnesar, Stanford Magazine, July/August, 2011. See https:// alumni.stanford.edu/get/page/magazine/article/? article_id=40741 for the original account, which includes color photos of each individual. 6

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escalating. You think, how can we top what we did yesterday? How do we do something even more outrageous? Sometimes when people know about the experiment and then meet me, it’s like, “My God, this guy’s a psycho!” But everyone who knows me would just laugh at that.

A “Guard”: John Mark Mark was about to begin his junior year at Stanford. He graduated in 1973 with a degree in anthropology. He lives in the Bay Area and has worked for the last 18 years as a medical coder. I had spent my sophomore year at Stanford in France and returned to campus that spring. It was one of the most pivotal times in my life. Over Thanksgiving of the year before, I went with a friend to Amsterdam. You have to remember this is 1970; it was basically the ‘60s. We went to one of those clubs where you could buy drugs. We bought hash and actually brought some back with us and I was caught at the French border. For a few hours, I was told by French border guards that I was going to prison. In the end, they let me go, but I definitely had been scared out of my wits. When I saw this thing about a prison experiment, I thought I had some life experiences to bring to it. I felt this was going to be an important experiment. I told them all about what I’d been through and why it was important to me to be a prisoner. It was very disappointing to be assigned to be a guard but I did the best I could. During the day shift when I worked, no one did anything that was beyond what you’d expect in a situation like that. But Zimbardo went out of his way to create tension. Things like forced sleep deprivation—he was really pushing the envelope. I just didn’t like the whole idea of constantly disturbing people and asking them to recite their prisoner numbers in a count. I certainly didn’t like when they put a guy in solitary confinement. At that time of my life, I was getting high all day every day. I got high before I went to the experiment; I got high on my breaks and lunch. I got high afterwards. I brought joints with me and every day, I wanted to give them to the prisoners. I looked at their faces and saw how they were getting dispirited and I felt sorry for them. I didn’t think it was ever meant to go the full 2 weeks. I think Zimbardo wanted to create a dramatic crescendo and then end it as quickly as possible. I felt that throughout the experiment, he knew what he wanted and then tried to shape the experiment—by how it was constructed and how it played out—to fit the conclusion that he had already worked out. He wanted to be able to say that college students, people from middle-class backgrounds—people will turn on each other just because they’re given a role and given power. Based on my experience and what I saw and what I felt, I think that was a real stretch. I don’t think the actual events match up with the bold headline. I never did and I haven’t changed my opinion.

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A Researcher: Craig Haney A graduate student of Zimbardo’s, Haney (M.A. ‘71, Ph.D. ‘78, J.D. ‘78) was responsible for overseeing the experiment and analyzing the data gathered from it. He went on to become a professor at UC-Santa Cruz, a leading authority on the psychological effects of incarceration and an advocate for prison reform. What we thought we were going to find is that there would be subtle behavioral changes that would take place over time. There were moments in the course of deciding about whether to do it where we wavered—not because we thought it would go too far or be too dramatic but because we weren’t sure anything was going to happen. I remember at one point asking, “What if they just sit around playing guitar for two weeks? What the hell are we going to do then?” People have said to me, “You must have known this was going to happen.” We didn’t—and we were not naive. We were very well read in the literature. We just did not anticipate these kinds of things happening. It really was a unique experience to watch human behavior transform in front of your eyes. And I can honestly say that I try never to forget it. I spend a lot of time with real prisoners and real guards; and having seen what I saw then, while a graduate student, gave me respect for the power of institutional environments to transform good people into something else. I also realized how quickly we get used to things that are shocking one day and a week later become matter-of-fact. During the study, when we decided to move prisoners to different parts of the prison, we realized that they were going to see where they were and be reminded they’re not in a prison— they’re just in the psych building at Stanford. We didn’t want that to happen. So we put paper bags over their heads. The first time I saw that, it was shocking. By the next day we’re putting bags on their heads and not thinking about it. That happens all the time in real correctional facilities. You get used to it. I do a lot of work in solitary-confinement units on the psychological effects of supermax prisons. In places like that, when prisoners undergo socalled therapy counseling, they are kept in actual cages. I constantly remind myself never to get used to seeing the cages. The prisoners in this study were a downtrodden lot by the end of it. Even the guys who didn’t break down were hurting. This was a really difficult experience. And for me, that was a lesson, too. Real prisoners learn how to mask their pain and act like it doesn’t matter. The prison study showed what it feels like for people who have not learned how to wear that implacable mask. I try to talk to prisoners about what their lives are really like and I don’t think I would have come to that kind of empathy had I not seen what I saw at Stanford. If someone had said that in 6 days you can take 10 healthy college kids in good health and at the peak of resilience and break them down by subjecting them to things that are commonplace and relatively mild by the standards of real prisons, I’m not sure I would have believed it if I hadn’t seen it happen.

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A “Prisoner”: Richard Yacco A community college student at the time, Yacco helped instigate a revolt against conditions in Zimbardo’s prison. He was released 1 day early from the study after exhibiting signs of depression. After working in radio and television production, he now teaches at a public high school in Oakland. At the time I was debating: if I were drafted to fight in Vietnam, what would I do? Would I be willing to go to jail? Since that was one of the considerations, I thought, “Well, a prison experiment would give me some insight into what that would be like.” The first thing that really threw me off was the sleep deprivation. When they woke us up the first time, I had no idea it was after only four hours of sleep. It was only after they got us up and we did some exercises and then they let us go back to bed that I realized they were messing with our sleep cycles. That was kind of a surprise from the first night. I don’t recall exactly when the prisoners started rebelling. I do remember resisting what one guard was telling me to do and being willing to go into solitary confinement. As prisoners, we developed solidarity—we realized that we could join together and do passive resistance and cause some problems. It was that era. I had been willing to go on marches against the Vietnam war, I went on marches for civil rights, and was trying to figure out what I would do to resist even going into the service. So in a way, I was testing some of my own ways of rebelling or standing up for what I thought was right. My parents came on visitors’ night. They were really concerned with the way I looked. I told them that they’re breaking up our sleep, that we weren’t having the chance to take showers. My appearance really concerned both of my parents, my mother especially. When I asked [Zimbardo’s team] what I could do if I wanted to quit, I was told, “You can’t quit—you agreed to be here for the full experiment.” That made me feel like a prisoner at that point. I realized I had made a commitment to something that I now could not change. I had made myself a prisoner. I ended up being paroled by the “parole board.” They released me Thursday night. That’s when they told me they were going to end the experiment the next day. What I learned later is that the reason they chose me [to parole] is because they thought I’d be the next guy to break down. I was surprised because I never thought I was going through any kind of depression or anything like that. One thing that I thought was interesting about the experiment was whether if you believe society has assigned you a role, do you then assume the characteristics of that role? I teach at an inner city high school in Oakland. These kids don’t have to go through experiments to witness horrible things. But what frustrates my colleagues and me is that we are creating great opportunities for these kids: we offer great support for them, so why are they not taking advantage of it? Why are they dropping out of school? Why are they coming to school unprepared? I think a big reason is

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what the prison study shows—they fall into the role their society has made for them. Participating in the Stanford Prison Experiment is something I can use and share with students. This was one week of my life when I was a teenager and yet here it is, 40 years later, and it’s still something that had enough of an impact on society that people are still interested in it. You never know what you’re going to get involved in that will turn out to be a defining moment in your life.

The “Superintendent”: Phil Zimbardo Zimbardo joined Stanford’s psychology department in 1968 and taught there until his retirement in 2007. The study was focused originally on how individuals adapt to being in a relatively powerless situation. I was interested in prisoners and was not really interested in the guards. It was really meant to be a single, dramatic demonstration of the power of the situation on human behavior. We expected that we would write some articles about it and move on. After the end of the first day, I said, “There’s nothing here. Nothing’s happening.” The guards had this antiauthority mentality. They felt awkward in their uniforms. They didn’t get into the guard mentality until the prisoners started to revolt. Throughout the experiment, there was this conspiracy of denial— everyone involved was in effect denying that this was an experiment and agreeing that this is a prison run by psychologists. There was zero time for reflection. We had to feed the prisoners three meals a day, deal with the prisoner breakdowns, deal with their parents, run a parole board. By the third day, I was sleeping in my office. I had become the superintendent of the Stanford county jail. That was who I was: I’m not the researcher at all. Even my posture changes—when I walk through the prison yard, I’m walking with my hands behind my back, which I never in my life do, the way generals walk when they’re inspecting troops. We had arranged for everyone involved—the prisoners, guards, and staff—to be interviewed on Friday by other faculty members and graduate students who had not been involved in the study. Christina Maslach, who had just finished her Ph.D., came down the night before. She’s standing outside the guard quarters and watches the guards line up the prisoners for the 10 o’clock toilet run. The prisoners come out and the guards put bags over their heads, chain their feet together, and make them put their hands on each other’s shoulders like a chain gang. They’re yelling and cursing at them. Christina starts tearing up. She said, “I can’t look at this.” I ran after her and we had this argument outside Jordan Hall. She said, “It’s terrible what you’re doing to these boys. How can you see what I saw and not care about the suffering?” But I didn’t see what she saw. And I suddenly began to feel ashamed. This is when I realized I had been transformed by the prison study to become the prison administrator.

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At that point I said, “You’re right. We’ve got to end the study.” [As the study was underway], there was an escape attempt at San Quentin prison and [former Black Panther] George Jackson was shot and killed. Three weeks after that, there’s the Attica prison riot [in New York]. Suddenly, prisons are hot. Two government investigative committees start hearings, and I’m flown out to Washington to present to a congressional subcommittee on the nature of prisons. I went from knowing nothing firsthand about prisons to being an expert. But I worked hard to learn more. I visited a number of correctional facilities all over the country. I organized a program for Stanford students to teach a course at a prison. For years, I had an active correspondence with at least 20 different prisoners. It wasn’t a formal experiment. My colleagues probably never thought much of it. But as a result of the prison study, I really became more aware of the central role of power in our lives. I became more aware of the power I have as a teacher. I started consciously doing things to minimize the negative use of power in the classroom. I encouraged students to challenge me. I think I became more self-reflective. I’m more generous and more open because of that experience. I think it made me a better person.

The Whistleblower: Christina Maslach Maslach (Ph.D., 1971) became a professor at UC Berkeley. She and Zimbardo married in 1972. They live in San Francisco. I had just finished my doctorate and was about to leave Stanford to start my new job. Phil and I had started dating. The prison study was never anything I was considering playing a part in. At first, Phil didn’t seem different. I didn’t see any change in him until I actually went down to the basement and saw the prison. I met one guard who seemed nice and sweet and charming, and then I saw him in the yard later and I thought, “Oh my God, what happened here?” I saw the prisoners being marched to go down to the men’s room. I was getting sick to my stomach, physically ill. I said, “I can’t watch this.” But no one else was having the same problem. Phil came after me and said, “What’s the matter with you?” That’s when I had this feeling like, “I don’t know you. How can you not see this?” It felt like we were standing on two different cliffs across a chasm. If we had not been dating before then and if he were just another faculty member and this happened, I might have said, “I’m sorry, I’m out of here” and just left. But because this was someone I was growing to like a lot, I thought that I had to figure this out. So, I kept at it. I fought back and ended up having a huge argument with him. I don’t think we’ve ever had an argument quite like that since then. I feared that if the study went on, he would become someone I no longer cared for, no longer loved, no longer respected. It’s an interesting question: Suppose he kept going, what would I have done? I honestly don’t know. People will

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sometimes come up to me—at conferences, or maybe they’re students who have taken psychology classes—and they’ll say, “Oh my God, you’re such a hero! What is it like to be a hero?” And it’s always a little surprising to me because it sure didn’t feel heroic at the time. The prison study has given me a new understanding of what “heroism” means. It’s not some egocentric I’m-going-to-rush-into-that-burning-building thing, it’s about seeing something that needs to be addressed and saying, “I need to help and do something to make it better.”

RESEARCH ETHICS BOARDS In the United States, the human research ethics board (IRB) developed out of the Belmont Report. Initially formed for seemingly altruistic reasons, the contemporary version of IRB is increasingly under attack by disgruntled to outraged scholars (e.g., Denzin, 2009; Lincoln, 2005; Lincoln & Tierney, 2004) who speculate the IRBs’ function is to protect the university and not the research participants. I provide a brief review of where the IRB started from, where it is today, and where it might go.

Institutional Review Board History Infamous and clearly unethical research conducted by U.S. researchers (e.g., The Tuskegee Syphilis Study) eventually resulted in the forming of a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research that published the 1979 Belmont Report. The Belmont Report detailed three fundamental ethical principles of beneficence, respect, and justice necessary for conducting human research, which became the foundation for the U.S. Human Subject Research regulations referred to as The Common Rule and IRB standards used today. Beneficence, sometimes called nonmaleficence versus maleficence, requires the researcher to put forth an explanation as to why the research is potentially beneficial to society, what gap the research may fill in existing knowledge, and what, if any direct benefits or risks there would be to research participants. I use words to describe the research deliberately couched in possibility (e.g., potentially, may) since no researcher can know the outcome of their research. I find it is important to be transparent about this issue with novice researchers. The only person we truly know will benefit from published research is the researcher on whose vita the entry resides or the employer of the researcher. Also, it is important to acknowledge in much of the research we conduct that we cannot know if there will be any direct benefit to the participants involved in the research. We may have some altruistic notion that it would be helpful to a participant to mull over the questions we are asking but we cannot know this and risk being patronizing or seeming foolish to proclaim this as a benefit. The only direct benefits to

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participants will be in studies with the resources to provide tangible benefits such as money or payment in kind (Dickert & Grady, 1999). Equally, while we may anticipate risks, the excitingly unpredictable nature of humans does not allow accurate prediction of risk. Tolich (2014) analyzed what researchers may learn from studies such as the Stanford Prison Study and said, We literally do not know what the outcome of research will be; that is why the research is being carried out. This uncertainty makes the research unpredictable in two important ways. First, it makes the potential benefits of the research difficult to weigh; second, it also makes the potential harms to the research participant difficult to weigh. This is important because the risks of the research need to be weighed against the benefits, and given that both the risks and the benefits are often uncertain, this is very difficult (Wilson & Hunter, 2010, p. 51). Prediction of harm with any certainty is not necessarily possible, and should not be the aim of ethics review. A more measured goal is the minimization of harm, not its eradication. (p. 89) Respect as interpreted by IRB may be seen in hallmarks of Western cultural values around human agency, free will, and autonomy. Respect for human rights in research is evidenced in the following examples. A researcher establishes a consulting committee representing the culture she wishes to sample from and works with the committee to create an appropriate research design and process for all stages of the research. Also, participants’ rights to the following—to informed consent when participating in a study (knowledge of all aspects of the study), to not answer all the researchers’ questions, to withdraw from a study without saying why, and children’s right to assent to a study or withhold assent and not participate in a study simply because their parent has consented—all illustrate respect. These rights stem from respect of humans in the areas of autonomy and power. Justice is arguably the most difficult principle to determine. Justice calls for an overarching view of what is occurring in research that local IRBs don’t have. Unfortunately, justice is often determined as society looks back over history. Take two highly different cases; first, the history of African Americans in human research. Tuskegee is one study alone in a long line of research conducted on African Americans to their detriment, but to the betterment of the larger society (Washington, 2006). Washington (2006) documented this history in horrifying accounts from antebellum America to today. In hindsight, it is clear African Americans have borne an unjust burden of research that has not been to their benefit. Second, the lesbian, gay, bisexual, transgender, queer (LGBTQ) community has the opposite story. While this community was historically researched as deviant sociologically, anthropologically, and psychologically, in the 1980s with the advent of AIDS, LGBTQ community advocates called for researchers to study this terrifying medical epidemic. However, researchers did not respond, most likely in a large part due to lack of funding, but also to not seeing an advantageous research line in studying what many considered throw away populations

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of intravenous drug users and the “sexually immoral.” It wasn’t until mainstream society realized heterosexual men and women could contract AIDS that research began to be funded. In this case, hindsight clearly allows us to see justice did not occur due to a lack of research when it was most needed. Justice is clearly a culturally linked term with much of the discussion as related to ethics being dominated by Western perspectives.

Current Institutional Research Boards While few current day researchers would argue against the importance of the Belmont principles, many would take exception with how the principles are currently enacted by REBs. (See Box 3.3 for an example of a research ethics situation that does need to be reported to an REB.) The current state of U.S. IRB review has been called ethical imperialism (Schrag, 2010), mission creep (White, 2007), nanny-state (White, 2007), ethics police, and more (Sieber & Tolich, 2013). Research ethics boards are seen increasingly as simultaneously broadening and deepening their ethical domain by reaching into areas of human interactions with scholars who work to acquire knowledge not historically seen as generalizable such as music, theater, oral history, journalism, and literature disciplines, while also deepening the level of review. Some of the concerns researchers have about IRB are as follows. First, IRB was developed from a biomedical perspective (Israel, 2014; Sieber & Tolich, 2013), thus engendering what could be interpreted as methodological favoritism or methodological ignorance causing detailed over scrutiny of research. Juritzen, Grimen, and Heggen (2011) have said, Specifically, this could be expressed in, for example, demands for a detailed description of methodologies and plans prior to the collection of data, and an injunction on any deviations from these plans. In addition, requirements tend to include the use of standardized procedures for obtaining consent and prior approval of questions in interview guides and requirements for detailed regulation of observational studies undertaken. (p. 645) All of these requirements would be inappropriate in culturally responsive relational research designs that, while well thought out in advance, are organic in nature. Conversely, review may also be inadequate. For example, a research proposal I reviewed for an IRB had already been approved by multiple universities, but important aspects of social science research were overlooked. From my perspective, as an education and social scientist, a primarily biomedical review had been conducted on an educational study. Close attention had been paid to the experiment and quasi-experiment portions of the multifaceted design, but basic concerns in focus group research were not addressed such as confidentiality issues within the focus group. Equally concerning was schools were awarded money only after a

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specified portion of teachers responded to data collection requests, a concern due to coercion and power. Second, the IRB has become increasingly bureaucratized and, at times, seems to function more as a protection for the university than for the people who are researched (Juritzen et al., 2011; Sieber & Tolich, 2013; White, 2007). While the university certainly needs to be protected from unethical researchers, it does not need an IRB to promote its interests or manage its reputation. Part of the issue of bureaucracy is also delayed and overly tedious reviews, resulting in IRBs seeming unwieldy and slow. Institutional Review Boards report not having enough resources, including human support (e.g. Emanuel et al., 2004; Makhoul et al., 2014); consequently, they are overworked and may be “under thanked” (Sieber & Tolich, 2013, p. 18). While acknowledging the highly supportive environment I am fortunate to work in, a lack of resources has certainly always been part of this context. Maria:  In my personal experience, my support was vastly increased over the IRB chair who preceded me and from the time period in which I reviewed IRBs all summer, for no pay, while not on contract (truly service!). However, the amount of IRBs submitted to my university has increased, which while exciting has made the nature of ethics review daunting. I also find I can only review a certain amount of IRB requests at a time or when I reread the IRB, I will find I have missed some aspect of the study. I must say I am thanked consistently for my work as my IRB co-chair similarly reports. It may be that our reviews tend to be efficient or that we have a knowledgeable administrator who does not make people feel ignorant as they negotiate the IRB process and will go over the smallest detail in a way they can understand. Maybe I am thanked because I personally always call or make a face-to-face appointment with a professor when there is a contentious point to discuss. I learned to take a relational approach early in my work with IRB when I received a cease and desist research letter from a university regarding a professor in his first month of work at my institution. Given the highly vulnerable nature of his population and the legalistic, punitive nature of the wording from his former university, I was deeply concerned and made an appointment to meet the professor at his office immediately. This highly urgent, ethical situation was in reality a case of a recent Ph.D. graduate not realizing he needed to transition his IRB to the university that now employed him. I came out of the meeting pleased to have met a new colleague, learned some about his research, and oriented him to the IRB process at his new institution. My institution also began an obviously needed orientation for new professors to IRB. Not having adequate human support certainly makes IRB reviews take a while. Also, researchers who have grants or conduct sensitive research do not always plan to have their IRB request submitted in ample time, student researchers repeatedly

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report their IRB requests languish on busy advisors’ desks, and a notable portion of the requests do not follow submission directions. All of these issues contribute to a sense of prolonged reviews. However, IRB reviews are far too long at times and at certain institutions due to reviewers stepping beyond the Common Rule or not understanding how research is conducted in other fields. For instance, I once heard a prominent official in human research say, “No researcher should give compensation to a participant who is committing a crime,” effectively wiping out whole fields of research, for instance controlled substances, undocumented persons, and highrisk youth behaviors such as shoplifting. In another case reported in the literature, a researcher had to continually explain to the IRB his grant supported research with youth who are LGBTQ. The IRB approval was not received until the first year of the grant had dwindled away with no research being conducted (National Research Council, 2013).

Institutional Review Board of the Future Continuing challenges for research ethics boards and the researchers who work with these boards will be (a) understanding the complex nature of near subcultures, distant cultures, virtual cultures, and negotiating competing cultural values within research; (b) maintaining a broad understanding of the vast and continually developing array of research methodologies through which human participants are studied; (c) being thorough, yet timely with reviews; and (d) data sharing and protection in a virtual world. These points call for a human ethics research board that is nimble, yet thorough; stays within bounds, yet responds to change (e.g., Internet research); and is protective, yet supportive. Scholars have highlighted ways researchers can support the development of this type of research ethics board. Lincoln and Tierney (2004) and Musoba, Jacob, and Robinson (2014) have excellent advice to frustrated scholars: join ethics research boards to help make change and create influence regarding how the guidelines are interpreted since aspects of the review certainly are created by local institutions. I took this advice early in my career and feel it has made a difference at my institution, but I understand from colleagues at other institutions research ethics boards are not always easy to join. Tolich (2014), discussing how IRB members are oriented to their duties, suggests, “Training novice ethics committee members should involve encouraging them to treat any project submitted for review as an opportunity to assist the researcher to find more ethical ways to conduct the research” (p. 91). Researchers (Musoba et  al., 2014) have pointed out social scientists need a human ethics code of their own with Tolich (2014) suggesting perhaps methodological codes are needed such as one specifically for qualitative research. More writing beyond obvious criticisms with fruitful suggestions such as these is needed. The U.S. Office of Human Research Protection had been in a period of examining how best to update the current Common Rule. In January 2017, the new

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regulations were released but were held up by the current presidential administration’s ban on any new regulations. If this ban is not renewed, the new regulations will go into effect January 2018, some 25 years after the first ones were written. The following is a review of possible changes affecting social scientists. For more information, see “Final Revisions to the Common Rule” (2017).

IRB Common Rule Changes Major changes to be enacted in January 2018 include: 1) The requirement for researchers to create consent forms with a clear and concise understanding of the research, including risks and benefits. 2) Increased use of a single IRB review for multi-institutional research studies. 3) In some cases, broad consent may be obtained for future research. 4) Additional exempt categories of research are added allowing IRBs to be more attentive to research that does pose risk. 5) Removal of continuing review of ongoing research studies where the review does not enhance the protection of research participants. As Tyler (see Box 2.1) noted, “We should not blame the past, or let it haunt the future by restricting ethical research; but we should embrace the wrongs and build a new history of research that is based on the welfare and safety of the always potentially vulnerable participant.”

BOX 3.1. LOOK MA, NO HANDS: RESEARCH ETHICS GOES MOBILE Research ethics institutes are starting to offer their rich resources in a variety of ways in order to make information more accessible to researchers; albeit many of the resources are highly scholarly, quite dry, and similar to sitting through a lecture. The content though is from top experts in the field. Additionally, you can access this type of resource while running on a treadmill, cooking dinner, or biking in a park, so there are mobility advantages. Importantly, most of the sources are currently FREE. Using a critical perspective, the following types of offerings make access for scholars from developing countries or countries with restrictions on Internet knowledge possibly more feasible. Some examples follow: (Continued)

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(Continued) • I Tunes U, Research Ethics Lecture Series, The Rock Ethics Institute, Penn State, http://rockethics.psu.edu • The Rock Podcast, The Rock Ethics Institute, Penn State, http://rockethics .psu.edu • iTunes U, SUNY Downstate Faculty Lectures series, Lessons in History a Look at the Tuskegee Syphilis Study.

BOX 3.2. RESEARCH ETHICS BOARDS IN THAILAND Denchai Prabjandee: I am a member of a university research ethics board in Thailand. Thailand is the one country in Southeast Asia that has recently mandated a human research ethics board review process at universities (see also Israel, 2015). Research ethics boards in Thailand termed Institutional Research Board (IRB) would feel somewhat similar to United States and Canadian REBs. Canadian human research ethicists have been contracted to provide much of the training in Thailand. Currently, many universities in Thailand have implemented what is termed a Standard Operating Protocol (SOP) for reviewing research ethics. Lecturers, researchers, and students are now increasingly aware of research ethics. This is because there is a reform movement at the policy level in Thailand. For example, before researchers submit a proposal for a national research grant, they are required to submit the proposal to the IRB committee to review potential risks, benefits, and scientific merit. Once the committee reviews initial proposals, the IRB issues a confirmation letter to certify that the research proposal meets the criteria. If the researchers receive the grant, they will have to submit the proposal for review again. It is essentially a double-review process. Additionally, students are required to attach the ethical approval form to their research otherwise they will not be allowed to graduate. All in all, I can say that the IRB has a powerful role in research in Thailand.

RESEARCH ETHICS BOARDS (REBs) Development and understanding of REBs at an international level is increasing. See Israel (2015) for an excellent, recent in-depth description of REBs in many countries and the U.S. Office of Human Research Protection’s compilation of over 100 countries and some 1,000 rules and guidelines for human research (www.hhs.gov/ohrp/international/compilation-human-research-standards/). Much can be learned by reading about other countries. For example, Canada, a country with a long-standing REB has had some recent revisions to their REB that are worth an in-depth reading by other countries (www.hc-sc.gc.ca/sr-sr/

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pubs/advice-avis/reb-cer/index-eng.php#t3_7). The terminology used instead of vulnerability is special care for certain populations. Groups covered and discussed, along with groups frequently designated as vulnerable by REBs, also include underdeveloped communities, recommendations for consulting with aboriginal populations, and research with women. I have tried to capture some of the recent developments in Table 3.1. My information is drawn from empirical descriptive studies conducted by researchers (Clough et al., 2013; Silaigwana & Wassenaar, 2015; Valdez-Martinez et al., 2008) and in-person conversations. Along with development of and resources for REBs, a primary issue for research ethics boards in non-Western countries is how to work with Western REBs yet maintain their own cultural ways of being, which may not include dearly held values in the West such as autonomy. Researchers explored REBs in Qatar and Lebanon and reported a lack of local cultural sensitivity as an area of concern. Researchers described the REB regulations as “inappropriate for the local context,” which was recurrently described as “not a research culture where people are not interested in research and are afraid of signing forms” (Makhoul et al., 2014, p. 29). I have also been told by doctoral students from Saudi Arabia that signing consent forms developed in the United States is not something Saudi participants readily wish to do. One potential participant from Saudi Arabia said to the researcher, who was also a Saudi citizen, “Are you with the CIA?” Similarly in the research literature, a doctor from Lebanon succinctly said, Consenting for research is a new concept, consenting for anything is a new concept. People have the right to participate or not participate [in the research] . . . we don’t want to shove it down their throats, we want to do it in a way that is sensitive to how we do things and the way we communicate in our culture. (Makhoul et al., 2014, p. 29) The cultural misunderstandings and monies tied closely to Western REBs and grants are so immense and the stakes in graduate degree attainment are so high that we risk as Western researchers ethically colonizing and recolonizing countries through our intent to be ethical. Along with international research issues of ethical colonization are issues of concern within countries such as the United States that have multiple subcultures and many international researchers who are housed in U.S. institutions. Take the example of Saudi student researchers alone. In 2015, in the U.S. Saudi students comprised approximately 6 percent of international students with almost 60,000 students (Zong & Batalova, 2016b). Throughout this chapter, we have experienced first-person narratives of those involved in historical, unethical research and research that hindsight has deemed questionable. As we move forward, ask yourself, what do you want the research ethics narratives of your field and your research experience to be? What theories and beliefs do you wish to weave into your ethical narrative? For as Supreme Court Justice Potter Stewart said, “Ethics is knowing the difference between what you have the right to do and what is right to do.”

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In some countries in order to be part of international health research

No

Yes

Egypt5 2010

Tanzania 20076 Half had training

Scarce

37% reported no resources Female representation to moderate was very low at less than 16%

Over two-thirds of REBs reported lack of human and physical resources

Females lacking except for one REB, dominated by medical researchers

2 

Lacking

Yes

Male and physician dominant, lacking lay members

Developing

Recent

Scarce

Unknown

Yes

Developing

Yes

National Ethical Guidelines

Developing Trained by Canadian human research specialists

Encouraged

Developing

Yes

Membership Diversity

Yes

Developing

Sub-Saharan Africa4

Thailand 2015

3

South Africa1

Philippines

Yes

Mexico2

1

Yes

Yes

Resources (e.g., capacity to review and monitor; facilities; staff)

Australia, Azerbaijan, Philippines, South Africa, Iran (Clough et al., 2013) Valdez-Martinez et al. (2008) 3  In-person conversation. See Box 3.2. 4  This information on this region is drawn from an extensive literature review and not from firsthand accounts (Silaigwana & Wassenaar, 2015). 5  Sleem, H., El-Kamary, S. S., & Silverman, H. J. (2010). 6  Ikingura, J. K., Kruger, M., & Zeleke, W. (2007).

1 

Encouraged

Developing

Iran1

Azerbaijan Inconsistent

Yes

Yes

1

Australia1

Training

REB

publication year

Region/country

TABLE 3.1  ■  Research Ethics Board Comparison by Countries Identified in the Literature

Chapter 3  ■  Research Ethics History  

BOX 3.3.  RESEARCH ETHICS VIGNETTE Boni Hamilton Jo-Jo (pseudonym), a fifth-grade participant in my research, started our first one-to-one interview for my dissertation by handing me an essay to read. She was proud to show me something she had written and shared with both parents. As I read her essay, I inwardly cringed. In the essay, Jo-Jo had written about her fear that she was in danger of being hurt. A classmate bully had threatened Jo-Jo and others if they told about his recess behavior including his part in breaking another student’s arm. No one had identified the bully, and Jo-Jo was afraid to tell. Jo-Jo was also afraid of her step-father who often hit her when her mother wasn’t around. Based on the essay, although she had told her parents, who had joint custody, no one had intervened. I was worried. I was required to report the incidents to authorities and keep Jo-Jo safe. I also believed Jo-Jo should know I had broken confidentiality. Ultimately, reporting the incidents might mean Jo-Jo could no longer be in my study. Ethics prevailed. I notified the school principal about the Jo-Jo’s step-father’s actions. Then I took the essay to a district administrator and called Social Services from her office. I never heard the outcome of either report. I also subsequently reported all these actions to the IRB. In my next sessions, I told each participant explicitly what would happen if they revealed threats or harm to themselves or others. They, in addition to their parents, needed to know the limits of confidentiality. Fortunately, for me, Jo-Jo finished the study.

Reflexive Questions 1. What role does a presidential apology potentially play in relation to gross human research misconduct? What are your responses to the following? a. Some might say the apology is high political theater without much meaning. b. Others might feel the apology sets the stage for change. 2. How might one design Zimbardo’s Prison Study today to satisfy research ethics boards and one’s personal ethical code? See Tolich (2014) for a discussion in this area.

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3. Given the U.S. IRB Common Rule scheduled changes when this textbook was published, try to find updated information on the Internet. This information may be with your university’s IRB, or the Office of Human Research Protection (OHRP). How, if at all, has the Common Rule been altered? What seem like helpful or unhelpful changes? Why? What, if any, other considerations should the IRB Common Rule have? 4. Discus the ethics quote at the opening of the chapter from playwright Bertolt Brecht. What might Brecht mean when he says, “Grub first, then ethics”? Why do you agree or disagree? What are possible outcomes of this perspective? Have you ever been without a basic necessity for a prolonged period of time? If not, can you imagine how ethical behavior might be impacted through deprivation of basic needs?

Resources Historical Unethical Research Centers for Disease Control and Prevention. (2011). Syphilis study at Tuskegee. Retrieved from http://www.cdc.gov/tuskegee/timeline.htm# Moe, K. (1984). Should the Nazi research data be cited? Hastings Center Report, 5–7. Plant, R. (2011). The pink triangle: The Nazi war against homosexuals. New York: Macmillan. Post, S. G. (1991). The echo of Nuremberg: Nazi data and ethics. Journal of Medical Ethics, 17(1), 42–44. Rees, L. (2005). Auschwitz: A new history. New York: Perseus Book Group. Skloot, R., & Turpin, B. (2010). The immortal life of Henrietta Lacks. New York: Crown. Washington, H. (2006). Medical apartheid. The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Harlem Moon, Broadway Books. Weindling, P. J. (2004). Nazi medicine and the Nuremberg trials: From medical war crimes to informed consent. New York: Palgrave Macmillan.

Chapter 3 

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Research Ethics History  

Foundational Resources for Research Ethics National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Washington, DC: Department of Health, Education, and Welfare. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/index.html Australia Human Research Ethics Counsel https://www.nhmrc.gov.au/health-ethics/human-research-ethics-committeeshrecs Ethical standards and procedures for research with human beings: World Health Organization http://www.who.int/ethics/research/en/ National Research Council of Canada http://www.nrc-cnrc.gc.ca/eng/about/ethics_integrity/research_ethics_board.html General Research Ethics Overview for Canada http://researchethics.ca Five Principles for Research Ethics (an APA article) http://www.apa.org/monitor/jan03/principles.aspx National Center for Professional and Research Ethics http://ethicscenter.csl.illinois.edu Web Center for Social Research Methods http://www.socialresearchmethods.net/kb/ethics.php

Discipline Codes of Ethics American Anthropology Association Code of Ethics http://s3.amazonaws.com/rdcms-aaa/files/production/public/FileDownloads/pdfs/ issues/ policy-advocacy/upload/ethicscode.pdf American Anthropology Association Ethics Blog http://ethics.americananthro.org/ American Education Research Association http://www.aera.net/AboutAERA/AERARulesPolicies/ProfessionalEthics/tabid/10200/ American Psychological Association (APA) http://www.apa.org/ethics/code/index.aspx

Teaching Ethics Misconduct: Three Ways to Blow the Whistle http://www.nature.com/news/research-ethics-3-ways-to-blow-the-whistle-1.14226

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Online Research Ethics Course https://ori.hhs.gov/education/products/montana_round1/research_ethics.html Resources for Research Ethics Education http://research-ethics.net/introduction/what/ Why Teach Ethics? http://research-ethics.net/introduction/why/

Video The Frightening Legacy of US Syphilis Experiments in Guatemala https://www.youtube.com/watch?v=nha9MsSSKvE The immortal cells of Henrietta Lacks—Robin Bulleri—TedEd https://www.youtube.com/watch?v=22lGbAVWhro The immortal cells of Henrietta Lacks—Book Trailer https://www.youtube.com/watch?v=1vow1ePzuqo HeLa Cells https://www.youtube.com/watch?v=0gF8bCE4wqA The Stanford Prison Experiment https://www.youtube.com/watch?v=760lwYmpXbc The Stanford Prison Experiment (This is the trailer to the recently released fulllength movie. Zimbardo has said the movie is an accurate recreation of the experiment.) https://www.youtube.com/watch?v=7LviGTHud5w

4 RESEARCH PRAGMATICS AND METHODOLOGICAL CONSIDERATIONS

M

ethodological choices in research are inherently ethical choices. As an integral part of the discipline, research methodology—the theoretical and applied examination of the methods employed to conduct research—must include what is right or wrong in how research methodology is conducted. These considerations at the core are value judgments or ethics. As early as the 1970s, Noblit and Bucart (1975) were considering how methodological decisions were one and the same as ethical decisions. The authors ended this discussion with sage, culturally responsive advice on how to enhance ethical methodologies: [G]o to the populations to be studied with a general outline of the research design. Solicit suggestions and help from the people themselves so that your interests are complementary to research needed. . . . Not only are you protecting your subjects, . . . but you may actually be a part of reducing their powerlessness and vulnerability. Ideally, the researcher-researched relationship should be one of exchange and mutual benefit. (p. 24) In this chapter, I attempt to consider methodological areas that are embedded with ethical issues from a culturally responsive stance. (See Chapter 2 for a Culturally Responsive Relational Reflexive Ethics [CRRRE] stance.) The array of issues is so vast that I have chosen to focus in-depth on participant consent and confidentiality. Research pragmatics, the daily practical decisions researchers make, and methodological considerations are issues that need careful thought at the outset and throughout the entire research study. These issues have no simple answers, might not be fully anticipated, are culturally complex, and our decisions might rest on what we believe as researchers and our responsiveness to what our community of research believes. As many have argued, a deep cultural understanding 71

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of what methods are most respectful and how these should be enacted is needed and an important aspect of becoming. Here, researchers who are cultural insiders or researchers committed to collaborate with research participants and/or members of the culture of interest are needed.

INFORMED CONSENT1 Informed consent, the participants’ agreement to be part of a study made with full knowledge of what the researcher intends to occur, is foundational to the research relationship. However, the contemporary consent form is often a lengthy document full of legal terms and researcher jargon that obstructs the goal of informed consent. Given the often tedious and time-consuming nature of obtaining a research ethic board’s approval, ideals of informed consent are often forgotten in lengthy drafting of consent forms. Often, when fieldworkers think of the phrase “informed consent,” it is with irritation. The phrase calls to mind the ethics review processes of the Institutional Review Board (IRB) many linguists and anthropologists dread. They lament that the IRB (or similar ethics review board for researchers based outside the United States) does not understand social science research, let alone the realities of fieldwork in remote areas where obtaining consent in writing may be counterproductive or even impossible. (Robinson, 2010, p. 187) I argue along with others (e.g., Robinson, 2010) that beyond a legal mandate, we have a moral mandate to ensure the consent process is as clear and transparent as possible. This is of course the informed part of consent where researchers attempt to enhance the possibility that the participants are informed as to what the researcher intends to occur in a study. Here, there is a fine line to balance between ample information and the need that the information is concise and simply written. The difficulty of informed consent increases as cross-cultural research is embarked upon. Informed consent has been described as having two aspects (Clough et  al., 2013). First, the participant must have a meaningful understanding of what they are consenting to. Second, the participant must have free choice (p. 3). How does a researcher enhance the likelihood of informed consent occurring? When the researcher and the researched are from varied contexts and/or the researcher possesses more power than the researched, consent is potentially even more confusing. Recently and repeatedly, researchers have assured me all that really matters with research consent is that the researcher can produce a signed consent form.  E xcerpts from this chapter are from the following journal article: Lahman, M. K., Mendoza, B. M., Rodriguez, K. L., & Schwartz, J. L. (2011). Undocumented research participants: Ethics and protection in a time of fear. Hispanic Journal of Behavioral Sciences, 33(3), 304–322. 1

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This stance seems to be based on prevention of possible noncompliance consequences or litigation. It is deeply concerning that this perspective continues to be set forth by researchers in a contemporary context. Perhaps some type of litmus test should be created where researchers identify someone important to them for whom the research process would be confusing. This person might be an old, young, or naive member of their family. Then researchers would ask themselves, “Is it OK with me that my family member has signed a form he/she doesn’t understand?” Researchers should use this actual person as a test for ethical dilemmas as they mull over how to proceed. When considering meaningful understanding of consent, certain groups of participants come to mind who may not be able to fully understand the research process cognitively or who have been deemed legally (e.g., minors), unable to consent to research for developmental and age reasons. While informed consent with these populations has been considered extensively in the literature and research ethics guidelines, understanding of consent with the general population is not something always considered (Clough et al., 2013). Just one aspect of research participants may not understand can be easily seen in the area of publication. Robinson (2010) underscored the difficulty in explaining dissemination in remote cultures where a concept of the digital age and Internet access is limited. I also have experienced this difficulty in near, highly educated, Internet-using cultures. I recall a teacher’s confusion who hosted a professor in her classroom for a semester while the professor conducted case study research. The teacher commented to me repeatedly that the professor never spoke to her of the research again. “What had happened?” the teacher wondered. While I assured her the research publication process was probably just taking the normal prolonged length of time to write up the research, submit to a journal, wait for the reviews, etc., the teacher had no context for the publication process. It may also be the professor was never able to present or publish the work. This happens more often than we care to acknowledge, and I can easily see that some researchers would be uncomfortable sharing lack of publication with their participants. Participants may not be able to understand what it means to be represented in a conference presentation, dissertation, research article, or book. It is hard for us, as researchers ourselves, to fully understand the power of the written word. The ease of accessing research online means audiences we are not traditionally aware of may encounter our work. Maria: One time when I was at a dinner with a colleague of my husband’s, the colleague referred to an auto-ethnography I wrote about my ectopic pregnancy. Needless to say, I was startled and not prepared for this encounter. Another time when I was being introduced as a keynote speaker, the person introducing me referenced the first piece I ever published—Fat Teacher. At the time of the keynote, I was not overweight, and the host turned to me during the introduction and said, “I don’t get that one.

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You’re not fat.” Again, this was certainly not an interaction I expected to have about my professional writing. My surprise was so notable the next speaker said in reference to his publications, “I have been doing research for so long I am sure no one would know my first work was experiments with animals!” So, if I am not fully able to anticipate what published writing means, I don’t believe all participants can. Dissemination is just one of the aspects of research that may be hard for participants to grasp. What does it mean to agree to be asked personal questions, be observed at work, have your psyche or body measured or probed? Thought of in this way, it is amazing anyone agrees to be part of a research study. It is important as researchers seek to obtain consent, an act we may be overly familiar with, that we try to see this process from the unfamiliar perspective of the participants and ensure they are informed to the extent possible.

Simple Language A first step toward creating meaningful understanding in the research consent process is creating consent forms that are simple, short, and written in plain language (Jefford & Moore, 2008). Informed consent documents have been found to be written at a higher reading level than that of the intended population (Ogloff & Otto, 1991) and at dauntingly long lengths, which have increased over time (Wittenberg & Dickler, 2007). Illustrating this problem, Mattingly (2005) compared her 1986 research—with 1 two-page consent form used for all types of participants—to her current research for which the REB required eight different consent forms, most of which were five pages long, single spaced, and full of legal phrasing. These longer forms will most likely not be read due to “time constraints and intimidation” (Wittenberg & Dickler, 2007). In the United States, although this is often not the practice, the IRB requires researchers try to convey consent forms in language research participants understand. Federal government IRB regulation 45 CFR 46 (2009) states, “The information that is given to the subject or the representative shall be in language understandable to the subject or the representative.” An adult literacy survey in 1992 found nearly half of the population was reading at an eighth-grade level. However, strikingly, research shows less than 10 percent of informed consent documents are at the ninth-grade level or below (Wittenberg & Dickler, 2007). It may be initially difficult to simplify consent documents since as scholars, we use specialized terms and REBs often use words such as the word pseudonym, which, while common to researchers, may not be used by lay people. To ensure consent language is understandable and the research process is fair and accessible, asking persons from the sample population of interest to review the consent form(s) prior to using it would be helpful. There are also websites where one can upload text and ascertain what level of language the document is being written in. Shortening paragraphs and judicious use of bullets may also be helpful.

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Sticking to one side of a sheet of paper when possible yet printing in a readable font will help. Take just one word that is on many consent forms—pseudonym. This word is difficult to pronounce and spell and is certainly not a part of everyday conversation. In this case, a phrase such as fake name might be a better choice. Fake name or number would certainly be an easy replacement for the researcher phrase numeric identifier. Scrutinizing the consent document for words that are ubiquitous in academic parlance but seldom used in everyday conversation is a first step toward simple language. See Box 4.1 for more details on simple language.

BOX 4.1.  KIS: KEEP IT SIMPLE Keeping the language in a consent form simple and short goes a long way toward increasing the likelihood participants understand the research for which they are consenting to be involved. To help evaluate the reading level, upload the consent form into a readability calculator to approximate grade level of reading. Depending on the group adult participants are from, the goal is to have a fourthto eighth-grade reading level. For children, the goal is to be below the level they are in at school since grade level does not mean they read at that level.

English Readability www.online-utility.org/english/readability_test_and_improve.jsp

Readability Score This website has a button you can drag to your toolbar for an easy access to this function. https://readability-score.com You can also enable Microsoft to allow you to assess documents’ readability within Microsoft. This link gives directions on how to do this: https://support.office .com/en-us/article/Test-your-document-s-readability-0adc0e9a-b3fb-4bde-85f4c9e88926c6aa. Wittenberg and Dickler (2007) suggest a simple, one-page informed consent document, which is possible primarily for studies with simple procedures. Their principles for writing a one-page form are • Avoid redundancies • Include only required information • Avoid unneeded additional elements • Group like information into more cohesive headings • Be concise • Remember the needs of the participants

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There are other versions of informed consent that may provide researchers ways to be more flexible and supportive of cultural needs. In what follows, I explain witnessed verbal or no signature consent, process consent, and process responsiveness.

Witnessed Verbal Consent Participants may verbally consent to be in a study for a variety of reasons. An explanation of why a verbal consent is desired should accompany a request to a research ethics board. Verbal consents may be witnessed by someone other than the researcher or audio recorded. Verbal consent/assent is common for children who are prereaders, adults who are illiterate, and some native groups (Vasgird, 2007). In the case of participants whose behavior is considered unlawful by the government, such as undocumented participants and controlled substance users, the REB should endeavor to create the most minimal paper trail possible. In studies where researchers are deliberately selecting participants who are undocumented, my university research ethics board and others ask the researchers to use a witnessed verbal consent. For more information see Boxes 4.2 and 4.3. In some of these cases, the researcher reads the consent to the participant in front of a witness, and the participant verbally agrees to be in the study. Although this strategy is effective and complies with the spirit of informing participants of their rights and ensuring there is a witness, unresolved issues remain. First, the participant does not have study-related information to take with them. In these cases, researchers could develop an informative flyer with the research topic, data collection methods, and contact information for the researcher(s) written in a generic style and not as an obvious consent. Second, in a highly relational study, the researcher would still know how to contact participants and may be compelled by authorities to reveal participants’ names. Third, the presence of a witness adds a second person who now knows the participant. In the examples for which I was a research ethics reviewer, the witness was a close friend or partner of the researcher. To ensure a safer environment for the participant, I suggest when possible the witness could be someone the participant chooses who is already aware of the confidential aspects of the participant’s identity. A deep concern for protecting the participant is reflected in the following quotes from witnessed consent reviews from past university research ethics board colleagues of mine: “Make a consent form with no signature line, only take notes, and do not record.” “We are concerned that your possession of signed consent forms associated with data indicating undocumented status would potentially put the families at risk . . . change to consent forms signed by witnesses known and trusted by the parents and girls.”

Chapter 4  ■  Research Pragmatics and Methodological Considerations  

BOX 4.2. EXAMPLE OF A WITNESSED VERBAL SCRIPT FOR INFORMED CONSENT Other examples can be found online, but few adhere to the simple, plain language I have advocated for in consent documents and provide here based on Ohio University’s work.

Verbal Script My name is [researcher’s name]. I am a [graduate student/professor/staff] at [institution’s name] in the area of [name of area you work in]. I am studying [brief description of the research] . . . The information you share with me may help [explain benefits or value of the research]. This [interview, survey, etc.] will take about [approximate time]. I believe our talk will be private since I will not link your name to anything you say. [Choose one of the below to explain risk]. [Example 1] I think there are no risks to being in this study. [Example 2] There is a [choose one; minimal risk or risk] . . . [explain risk, e.g., hearing these questions may make you uncomfortable]. Participation is voluntary. If you decide not to participate or choose to stop being in the study at any time, there will be no penalty or loss of benefits to which you are entitled. You can, of course, choose not to [discuss any issue, answer any question, etc.] If you have any other questions concerning this research or your participation in it, please feel free to contact me, my research supervisor, or our type of [institution] research office at any time.” At this point the participant should be given a contact card. See Box 4.3 for more information. [State the following at the beginning of recording an interview.] I am making a recording of our talk, so that I can refer to it later. I will type the recording and keep it confidential. I will erase the recording after I type a record of it. Do you have any questions about this research? Do you agree to participate? Source: http://orrp.osu.edu/irb/investigator-guidance/sample-research-documents/

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BOX 4.3. SAMPLE CONTACT INFORMATION CARD USED WITH VERBAL CONSENT SCRIPT The researcher is:

The research supervisor for this research project is:

Jill Graduate Smith

Dr. Jane Smith

Department/College Department/College Address of Institution

Phone:

Phone: Email: Email: You may contact me or my research supervisor with questions or concerns. You may contact my university research office by phone (phone number here) or email (email here) to discuss questions or concerns about the study with someone who is not part of the research team. Source: http://orrp.osu.edu/irb/investigator-guidance/sample-research-documents/

Process Consent Process consent (Ellis, 2007; Munhall, 1988; Usher & Arthur, 1998) may be said to have two parts. First during the initial consent process the researcher thinks through how to increase the likelihood of informed consent. This may include reading over a document with participants, explaining sections that are highly important, and reviewing the contents in a paraphrase to be sure the information is comprehended. Schelbe et al. (2014) point out the importance of watching the youth participants they conduct research with for facial cues that may express discomfort or puzzlement and slowing down the consent process to increase comprehension. In research, I was privileged to supervise (DeRoche & Lahman, 2008), my coauthor conducted research with youth receiving mental health services. She noted the caregivers of youth receiving mental health services seemed to be overly familiar with the process of signing consent forms. Every caregiver in the study signed the form without appearing to read the full document. This phenomenon could be related to parent(s)/guardian(s) of youth receiving mental health services being more accustomed to signing consent forms and legal paper work regarding their children, in addition to the therapeutic misconception associated with the researcher. (p. 25)

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We also surmised that the youth seemed honored to have their signature requested on the assent form, which was quickly signed (DeRoche & Lahman). Thomas and O’Kane (1998) sent youth leaflet or audiotape describing their research, a novel way to address these problems. The second part of process consent is a commitment the researcher makes to check with participants through the entire study to see if they remain comfortable being part of the inquiry. This is not a tedious, belabored affair, but a natural relational check. Perhaps when meeting again for research, the researcher would simply say, “How are you feeling about being in the study? Are there any questions I could address?” Process consent means the researcher is committed to ongoing consent, not simply a one-time signature at the outset of a research relationship. The researcher checks in with participants at different points to see if they still wish to be in the study, to use a pseudonym, or use their real name (if this is a choice). This type of consent is dynamic; the researcher needs to be willing to be flexible and maybe even disappointed when participants change their minds about data or any aspects of the research.

Process Responsiveness My colleague, Katrina Rodriguez, coined the term process responsiveness in research (Lahman et al., 2010) as a concept linked closely to process consent. Being responsive means providing “ongoing information as it becomes available, even when it requires the use of appropriate and judicious researcher self-disclosure” (Etherington, 2007, p. 614). Ellis (2007) referred to responsiveness as researchers “checking at each stage to make sure participants still want to be part of their projects” (p. 23). An illustration here is asking participants at the end of an interview if there was anything else they should have been asked or that should be reworded or not asked for future participants. This may be an empowering experience. Process responsiveness is an all-encompassing stance whereby one is committed to a reflexive methodology that calls for the researcher to check in with the participants and fellow researchers regarding everyone’s comfort with all aspects of the study.

Cultural Aspects of Consent Western research ethics boards are risking a retrospective, critically framed understanding that we have been ethically recolonizing the rest of the world by exporting research standards that are inflexible when organic, contextually informed ethics are necessary. It is frightening so many countries have imported regimes from the global North that appear incapable of respecting different ethical traditions, learning from local knowledge of context, or engaging with local researchers, institutions, participants, and other stakeholders in the world of research. (Israel, 2015, p. 191)

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A listening posture is vital in this situation so international researchers may feel free to inform Western research boards and researchers about cultural mores not necessarily shared and without feeling judged. Israel (2015), in his text on research ethics, calls for more discussion about the implications of culture and ethics: “The world of academics and, of course the world within which we operate have evolved. There may be . . . more likelihood we have to engage with intercultural and indigenous issues” (p. 186). When high-stakes research is involved (e.g., funded research; degree obtaining research), researchers may fill out the forms correctly for Western ethics boards, but what is actually occurring in the field? Some cultural conflicts have been reported in the literature (Clough et al., 2013; Israel, 2015). See Box 4.4 for an example from Iran. Researchers have shared with me that when trying to use standard Western consent forms in the Arabic Gulf region, they have been greeted with complete perplexity, suspicion, and outright accusations of being part of the U.S. Central Intelligence Agency or a spy. Similarly, a researcher working with participants from the Horn of Africa was asked if he was a spy when he presented IRB documents to a key gatekeeper. I was told participants in the area of East Africa, did not want to sign consent forms because they felt the form was unnecessary due to the positive relationship they had with the researcher, which on occasion was described as friendship. In a near yet subculture of the United States, alternative music groups, the consent form was also interpreted as a breaking of friendship and close relationship. Signing the consent form seemed to signify the participant was suspicious of the researcher or vice versa. My family has long-term experience in East Africa, and I interpret the reluctance to sign the consent form as wanting to honor hospitality and generosity to a guest without the necessity of legal forms. Maria: I write this section with internal conflict as a feminist whose family roots are recently out of conservative religion. Research ethics boards have done a poor job of recognizing cultural aspects of consent that do not align with the deeply valued Western ideal of autonomy. Western codes of ethics are based on autonomy stemming from our belief in free will. As women, we have worked hard to also have these freedoms, moving ideals for mankind to humankind. I, like many other feminists, worry Western women take our freedoms for granted. However, what about our sisters who live within societies that deeply value community over autonomy? In these groups, it may be the leaders (often male), fathers, or husbands of women that provide consent for a woman to participate in a study and parents provide consent for children. How then does a Western researcher handle this dilemma? Certainly, these participants are among the very groups we hope to better understand. As a young woman, I heard women who are required to cover their hair in public say, “Let us fight our own battles in our own way. . . . Don’t come from the outside and do our fighting for us.” Yet my grandmother’s legacy is deeply rooted among East

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African women where she dispensed health care to young women who had recently had a clitorectomy. It seems from the stories of my family that some of the women sought a way out of this ancient custom. When are we supporting our sisters, and when are we re-enacting paternalistic colonization upon them? This is the dilemma.

BOX 4.4.  IRAN: INFORMED CONSENT Human research ethics has been formalized and developing in Iran since national committees first were formed in 1999. Research in Iran is overseen by the Ministry of Health and Medical Education and the Ministry of Science. While both ministries have guidelines for research with humans, researchers are not required to participate in an ethics review. Education about ethics in research is not typically part of a graduate education. Since there is no requirement for ethical review, ethics in the research process is up to the researcher. Within Iran, subcultures will impact how consent may occur for women. For instance, in more rural, smaller, conservative societies, consent to be in research would be attained from a father or husband, and the researcher may need to be female. In these situations, after receiving permission from the male relative if possible the researcher should ascertain the female participant’s assent to the research even though seemingly there are few guidelines that exist for this context. However, there will also be research contexts in Iran where the women will be in charge of their own consent. Clearly insider knowledge and working closely with gatekeepers is warranted here. Such considerations of religious and gender differences within the Iranian culture are critical for the conduct of ethical research within Iran. Researchers should consider the extent to which true informed consent may be possible for all participants as well as methods for ensuring the protection of the most vulnerable participants within these communities (Clough et al., 2013). I’d like to thank Clough et al. (2013) for their work, from which I drew on extensively. I also consulted with Iranian colleagues.

CONFIDENTIALITY Seeking to enhance the confidentiality of the participants is a hallmark of ethical research. While as researchers we can never say we ensure confidentiality, due to human error, required reporting of certain harms or intent to harm, or legal injunctions, we can take steps to maximize confidentiality. In this section, I review some fundamentals of research confidentiality and present an in-depth examination of pseudonyms, a standard way to heighten confidentiality, and situations where participants do not desire confidentiality.

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Anonymity and Confidentiality It is worth reviewing the terms anonymity and confidentiality since they are frequently conflated. In anonymous research, even the researcher does not know who is in the study. The researcher would not know who responded to requests to participate in a study or to which person the data are connected. A classic research example of this is the anonymous survey where the researcher does not collect any identifiable data. More recent examples include certain types of Internet research. Research confidentiality however is directly related to the measures a researcher takes to keep the identity of the participants in confidence. Historically, primary ways researchers have sought to enhance confidentiality are through locking up identifiable research data, destroying identifiable data at some point, and de-identifying data by providing pseudonyms or numeric identifiers in transcripts and research reports. Also, in highly sensitive research or for persons who are easy to identify researchers remove some demographic details. Contemporarily “locked up data” seems to have moved primarily to be digital, on a passwordprotected device, and may be encrypted. See Chapter 9 on virtual ethics for more discussion regarding these changes. Since we are usually focused on protection of identity, researchers may be surprised and unsure of how to proceed as they encounter groups that wish to have their actual identity/name linked with data. It seems that in-person, indepth, relational research with participants may yield people who do not want their story stripped from their identity through the assumption that social scientists use pseudonyms unconditionally (Barnett, 2012; Fischer, 2012; Fisher, 2008; Sieck, 2012). Carefully following the IRB consent process, a researcher may use real names to respect the wishes of a participant. Researchers outside of the United States should investigate if they also can use given names in research. See Kavanagh (2012) for an example of using participants’ names in the United Kingdom. This aspect of confidentiality will be discussed further in the pseudonym section.

Certificates of Confidentiality The United States National Institute of Health (NIH) offers researchers an option for research confidentiality termed A Certificate of Confidentiality, which may be useful for some researchers. Certificates of Confidentiality are issued by the NIH to enhance the confidentiality of research participants by protecting investigators and institutions from being compelled to release identifiable information. Certificates of confidentiality are issued to institutions or universities where the research is conducted. “The certificates allow the investigator and others who have access to research records to refuse to disclose identifying information in any civil, criminal, administrative, legislative, or other proceeding, whether at the federal, state, or local level” (“Certificates of Confidentiality,” 2016).

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Researchers apply for their institution to receive this certificate for a certain study. However, although highly valuable, the certificate may only be practical for large funded studies due to the amount of time it takes to receive the certificate.

Pseudonyms2 Pseudonyms are seen as a primary way (and by some as required) to enhance confidentiality of research participants in the social science research process. The overriding use of pseudonyms may be confused as equal to ethical research. Ellis (2007) commented, “IRB approval for my project, which came quickly when I stated that I would protect identities of community members with pseudonyms, gave me a sense that I was doing ethical research” (p. 7). Pseudonyms are pervasive in human research, thereby garnering a minimum discussion in the literature (for notable exceptions, see Behar 1993; Guenther, 2009; Nespor, 2000). In practice, researchers may apply pseudonyms with little thought or on occasion with deep reflection (e.g., Van den Hoonaard, 2003). Human researchers may assume either their discipline or the federal government (e.g., IRB) requires the use of a pseudonym. Those with oral history expertise (e.g., Behar, 1993; Boschma, Yonge, & Mychajlunow, 2003; Gluck & Patai, 1991; McLeod & Francis, 2007) will know this is inaccurate. In my experience, the assumption may stem from the research conducted from biomedical orientations. The U.S. federal government does not require a pseudonym and provides avenues for those participants who wish to use legal names (e.g., Giordano, O’Reilly, Taylor, & Dogra, 2007; Grinyer, 2002). Human subject protection codes and discussions in this area of the federal guidelines revolve around privacy and confidentiality. Given the potential vulnerability of any participant, I do believe there are research studies where pseudonyms are a vital part of increasing confidentiality in human research. This need may be seen when studying an undocumented person (see Chapter 6, this volume) or in research with someone who is a “whistleblower” (Elliston, 1982; Jensen, 1987). However, for those participants or researchers who desire to use real names, an addition of language to the consent form that clearly states the participants’ desires to use their own name and understand the contexts their name will be used in allows relational researchers to proceed with honoring this request (see Table 4.1).

2  Parts of this section are excerpted and updated from Lahman, M. K., Rodriguez, K. L., Moses, L., Griffin, K. M., Mendoza, B. M., & Yacoub, W. (2015). A rose by any other name is still a rose? Problematizing pseudonyms in research. Qualitative Inquiry, 21(5), 445–453.

84  Part I ■  Becoming Ethically Responsive Researchers TABLE 4.1  ■  People Who May Wish to Use Real Names Who

Practical Reason Why

Theoretically Why

Oral historians

In order for future historians to verify accounts

May stem from tradition or a belief in objectivism

Some participants of color

Ownership; respect; their story belongs to them.

Critical perspective; colonization of name by White researchers

Participants who are famous (e.g., musicians, politicians).

Participants have a unique, identifiable context and contributions that must be part of the study.

Not theorized

Researchers of the uniquely identifiable (e.g., Malawian provost, elite athlete)

The person will be identifiable.

Not theorized

Bereaved (Scarth, 2016)

Memorialize loved one

Some initial theory

Current Use of Pseudonyms Unfortunately, there is little to report in the way of literature regarding research participant pseudonyms (for notable exceptions, see Guenther, 2009; Nespor, 2000; Scarth, 2016). I reviewed 78 qualitative research articles and found sparse reference to pseudonyms. My experience echoes Hurst (2008) who said, I would like to discuss the issue of naming. I have searched diligently in many methodological sections and treatises for reflections on this issue but have failed to find any satisfactory answers. Briefly put, I am concerned about the power of the researcher to rename his or her respondents. But there are no good guidelines that I have seen, of how to go about doing the renaming. (p. 345) While there is a dearth in the literature, it may also be due to issues with searches of journal article titles, abstracts, or keywords and the ubiquity of the topic. In the case of the former, I rarely found authors including the word pseudonym in the title, abstract, or keywords; instead, authors used more encompassing terms such as anonymity or confidentiality. Using these terms lacked the specificity needed for a literature search. Other than exceptions noted, all of the

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articles except one used brief phrases to discuss pseudonyms. Examples included statements such as pseudonyms were used; in parentheses after the name, (a pseudonym) was by far the most dominant use; and pseudonyms were used to mask the identity. One scholar used the real name of a participant at the request of the participant. Maria: As part of the first significant qualitative study I conducted, I became intrigued with pseudonyms. I had recently read Translated Woman (Behar, 1993) where the main participant, a Mexican woman, when asked to choose her own pseudonym chose the name Esperanza, meaning hope. Behar identified the name as a symbol of Esperanza rising like a phoenix out of the ashes of her brutal life. With this story in mind, I asked the participants in my research, early childhood teachers, to choose their own pseudonyms, yet they casually deferred the task to me. I gently insisted the teachers choose. The next time I spoke to the teachers, the assistant teacher said she had chosen the name Kay since it is a piece of one of her given names. This made sense to me because like many people, my passwords are pieces of names important to me both in an effort to remember numbers and in a sentimental gesture. However, Kay’s close connection to her name put her at risk of having her true identity discovered. The lead teacher asked to be called Sidney. She laughingly confided Sidney would be her risqué name in a different life, stating everyone has a sexual alter ego. At first, I was privately taken aback and I thought I certainly would have a hard time writing about the teacher I was hoping to describe in professional terms as “Sidney” and secretly knowing why she chose that name. This was a far cry from how I had imagined she might name herself. As I reflected over the day’s events, I felt this was a sharp reminder to me—the teachers were unique individuals, and I should not to try to set experiences from other studies onto ours. I did think Sidney’s reason for choosing her name was representative of her personality. She is a humorfilled woman who will at times relate to the children and colleagues in a playful, irreverent manner that brings them closer to her through laughter and pleasure. Her teasing with adults might have been mildly ribald, but it belied her clear blue eyes and soft blonde hair. I kept the name Sidney and learned to associate it with a compelling young teacher who did not follow all the rules, who fought for the rights of her students, and who was an advocate for their needs. While I kept the name, I never was certain if I should share its risqué choosing with a scholarly audience.

Pseudonyms and Power “A rose by any other name would smell as sweet.” —Shakespeare in Romeo and Juliet

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In this section, I review methodological considerations in the area of power in participant naming. Researchers are encouraged to reflect prior to, during, and after research through personal research journaling and dialogue with colleagues and participants about implicit or explicit beliefs they have regarding names. Questions are posed at the end of the chapter to help with this process. This reflexivity may increase the researcher’s ability to reply in a responsive fashion to any dilemmas. I open the discussion of naming and power by framing this section with Shakespeare’s famous quote regarding names and roses for the reader’s consideration. Some readers may wonder, what is all the fuss about simply changing a name? Researchers have been assigning pseudonyms throughout the history of research and have believed this practice is for the protection of the researched. However, practical experience and research has shown people will assign characteristics to other people according to their name. For instance, in a study of email usernames, participants were willing to assign gender, race, age, relationship status, and even mental health to email usernames that did not denote these characteristics (Heisler & Crabill, 2006). Hurst (2008), speaking specifically to the topic of pseudonyms, wrote of her concerns about the power in naming, saying, “I am concerned about the power of the researcher to rename his or her respondents. Personal names do matter” (p. 345). Hurst went on to mull over one example I find critical and believe was common practice historically. “Anglicizing a person’s ethnically identifiable name, say renaming a German named Jurgen ‘John,’ can become a serious misrepresentation. Even more so if a German named John is renamed by the researcher as ‘Jurgen.’” (p. 346). A CRRRE researcher listens for counter narratives, hidden stories that are off the beaten track of academia. One such story I have heard repeatedly in my work with IRB and have begun to see in the literature (e.g., Barnett, 2012; Fischer, 2012; Fisher, 2008; Sieck, 2012; Van der Geest, 2003) is some persons of color and Othered positions (e.g., prisoners; Tilley & Gormley, 2007) desire to be named and honored in research as the one from whom a story emanated. Researchers have also reported to me not being allowed by IRBs to honor their participants’ wishes. Irvine (2012) shared an example of this type of silencing by an IRB. A researcher studying an LGBTQQ+ (lesbian, gay, bisexual, transgender, queer, and questioning) group shared the IRB, “made me change the reporting of names to be completely anonymous even though almost all of my subjects WANTED to be identified in the study—it was a Pride organization whose entire goal was about being out and proud!!” (p. 32). Following a CRRRE framework urges us to act supportively regarding requests for real names and at the least to choose pseudonyms with participants, not simply assign fake names, and to use human names rather than numeric identifiers to keep a sense of the human participant (For more reading see Clough &

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Conigrave, 2008; Guenther, 2009; Lucock & Yeo, 2006; Nespor, 2000; Newell, 2010; Zarsky, 2004). See Box 4.5 on one way to go about consent for use of someone’s name (Kiser, 2009).

BOX 4.5. EXAMPLE OF POST-INTERVIEW CONFIDENTIALITY FORM Post-interview confidentiality form It is our goal and responsibility to use the information that you have shared responsibly. Now that you have completed the interview, we would like to give you the opportunity to provide us with additional feedback on how you prefer to have your data handled. Please check one of the following statements: You may share the information just as I provided it. No details need to be changed and you may use my real name when using my data in publications or presentations. You may share the information just as I provided it; however, please do not use my real name. I realize that others might identify me based on the data, even though my name will not be used. You may share the information I provided; however, please do not use my real name and please change details that might make me identifiable to others. In particular, it is my wish that the following specific pieces of my data not be shared without first altering the data so as to make me unidentifiable (describe this data in the space below): You may contact me if you have any questions about sharing my data with others. The best way to reach me is (provide phone number or email): Respondent’s signature

Date

Investigator’s signature

Date

(I’d like to thank Karen Kiser [2009] for allowing me to use this example from her detailed work on nuanced informed consent.)

Real Names Versus Pseudonym When discussing with a participant whether to use real names, there are three major considerations among many possible pros and cons. Once published, research is a permanent record. With the ease of the Internet, it is a matter of mere moments to find journal references with a person’s name. While it is unlikely

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people who aren’t scholars will be overly interested in conducting this sort of search, it is possible. Therefore, researchers and participants need to carefully examine implications of using real names associated with relational, developmental, and economical considerations. Relationally, when real names are used, the people directly associated with the participant are also known. For example, people with the same family name (partners, parents, siblings) and people the participant refers to, for example, their doctor or supervisors, are easily identifiable. When writing in this manner, I have chosen to leave out all gender references or clues to people I describe critically (e.g., Lahman, 2009). This concern has also been termed third party issues by Hadjistavropoulos and Smythe (2001) who stated, “The main ethical problem stems from the fact that these individuals did not give consent to have stories about them circulated in this way” (p. 169). Developmentally, as time passes, will participants still wish they had used their real name? For example, at the start of the AIDS epidemic, no one thought people could live with HIV. Is a participant (or anyone) able to understand how using their name impacts them in the future, such as in the case of children and youth? This then begs the question, should another person be allowed to consent for use of a given name (e.g., a parent or custodian)? Economically, could there be an unanticipated impact to current or future work? For example, a participant runs for a political office or takes a public position in the future. Reporters certainly have the wherewithal and will to search for references to a person’s name on the Internet. Future employers also search a prospective employee’s name. This may simply create social awkwardness such as in the case I referenced earlier of an auto-ethnography I wrote where the work was referenced in a startling context. When using real names, clearly documenting and conducting discussions with the participant across the context of the research is necessary (see Table 4.2). I close the section on pseudonyms with a call for a brief statement to be included in articles regarding the naming process (see Table 4.2). In a longer reflective article or book, a page or so may be warranted. I also believe there is a need for an increase of methodological articles in this area (e.g., Guenther, 2009; Nespor, 2000; Van den Hoonaard, 2003; Zarsky, 2004).

CULTURALLY RESPONSIVE ETHICAL RESEARCH METHODOLOGY In qualitative, culturally responsive, relational, reflexive research and research in general, it is arguable that ethics are paramount (Morrow, 2008; Van den Hoonaard, 2003). Indeed, the “best” research may be deemed useless if it is unethical. Transparency in research may enhance researchers’ ability to conduct ethical research. Therefore, I continue to call for traditional research procedures that are ubiquitous such as the use of pseudonyms to be examined and reflected upon to maximize researchers’ ability to conduct ethical, relational research.

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TABLE 4.2  ■  Explanations of the Naming Process Type of Research

Possible Statements

A large sample

Participants were given randomly generated names to increase their confidentiality.

A relational study

Participants chose their own pseudonyms. Participants were given the option to use part of their legal name or a nickname. Participants were given the option to use their legal name. Participants’ requests to use their given names were honored throughout.

A study where nicknames are part of a subculture of study (Internet, gaming).

Participants were given the option to use their nickname as a reflection of the culture they represent.

Sensitive research

Participants chose their own pseudonyms. Pseudonyms were utilized to increase confidentiality.

Increased support and encouraging changes in the areas of transparent, informed consent and confidentiality including researchers’ ability to support choice in pseudonyms, and complex cultural aspects of these issues have been discussed. A nuanced view of these issues has been advocated. A nuanced view of consent means moving away from the assumption that every respondent desires complete confidentiality, and it instead recognizes that a research participant might want to receive recognition for some or all of what he or she contributes. By assuming all study participants want complete confidentiality, researchers risk becoming paternalistic and denying participants their voice and the freedom to choose how their data are handled (Kiser, 2009).

Reflexive Questions 1. Consent Forms •• What are the requirements for consent forms at your institution? •• How might you educate your institution on any needed consent form alterations you may have? •• When might you utilize alternatives to the signed consent form (witness, process consent)?

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2. Confidentiality •• What are ways you can enhance confidentiality in research? •• How secure are the places where you keep identifiable data? How might you enhance the security? •• If you conduct Internet research or store data in the Internet, how secure are these connection and sites? How might you go about investigating security levels and/or enhancing security? •• If a participant wants to use their real name how would you handle ensuring they understand risks associated with losing confidentiality? •• How might you honor the request of participants to use their names in research? 3. Pseudonyms •• What do you know or can find out about your naming process? •• If you have chosen a name for others what did that process entail (e.g., a child, pet, cherished car, research participants)? •• What implications does your culture have for the naming process? •• What might be the implications for cultures you study? •• How were or weren’t you trained to generate pseudonyms? •• How have you created pseudonyms in your research? a. What worked well, or what might you change?

Reflexive Course Experience Rewrite a consent form that you have used in the past using simpler language. ••

Upload the before and after versions of the consent form into a reading level calculator. See the ones provided in Box 4.1 titled Keep It Simple. What is the reading level of each form?

••

Have people who are from your potential participant population review the consent form with you and discuss what they think it says.

••

What was this process like for you?

••

Is the new simplified form a possibility in your research? Why or why not?

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Resources Informed Consent The below will certainly change as the IRB Common Rule is updated. Check for updates at The Office for Human Research Protection (OHRP). OHRP (Office of Human Research Protections) Informed Consent FAQs https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/ index.html OHRP Waiver or Alteration of Informed Consent Decision Tree http://www.hhs.gov/ohrp/policy/checklists/decisioncharts.html#c10 OHRP Waiver of Signed Consent Decision Tree http://www.hhs.gov/ohrp/policy/checklists/decisioncharts.html#c11

Pseudonyms See Bradley (2007) for an in-depth example of how some university IRBs have a limited understanding of requests for use of a real name from participants.

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I

n Part II of the book, I feature exemplar chapters of how Culturally Responsive Relational Reflexive Ethics (CRRRE) work when applied to specific groups of people or issues of research interest. The topics are carefully chosen from my personal experiences working with an amazing array of researchers who are passionate about these issues and willing to share the ups and downs of their research experiences. While I have updated all of the work to maximize the cutting-edge nature of this book, when I had coauthors on the original unpublished conference manuscripts with whom I could not have written the original work, they are credited as such. I am deeply in debt to these scholars. Without the in-depth access and trust they extended to me, I could not have had the opportunity to think reflexively about these important issues. Chapter 5, “Ethical Research With Children: Always Othered?” is the culmination of the decades I have spent in child cultures. In this chapter, I see the presence of my parents, siblings, early childhood professors/colleagues, and the vast array of children I played with, babysat, taught. These caring people have sought ethical ways to teach me and to work with children. Within this context, I consider ethical ways to conduct research with children. Along with coauthors in Chapter 6, “Ethical Research With People Who Immigrate: A Stranger in a Strange Land,” I reflect on our immigrant histories, research with sojourners,

PART TWO

EXEMPLARS OF BECOMING CULTURALLY RESPONSIVE ETHICAL RESEARCHERS

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documented, refugee, and undocumented immigrants, and the unique and similar ethical issues researchers may encounter with these participants. In Chapter 7, “Ethical Research With People of Diverse Sexual Orientation: Inescapably Othered?” with coauthors, I present ethical dimensions that assist research scholars in the examination of ways to conduct research with sexually diverse populations. As part of an educational ethnography of an LGBTQQ+ university cultural center conducted by an author, we developed an ethical stance in relationship to queer constituents. The murder of a community member who was transgender, the suicide of a study participant who was gay, and the corresponding everyday research occurrences precipitated deep reflection. Chapter 8, “Ethical Research With People Who Are Homeless: ‘My Mind’s Not Homeless’” is a presentation of an ethical stance I developed with researchers who study the homeless, including one researcher who was homeless. We review the research literature related to persons who are homeless and/or highly mobile and vulnerable participants, describe the research we conducted and relevant ethical dilemmas, reflect on our experiences with people who are homeless, and present areas of culturally responsive ethical consideration including compensation in research. Finally, in Chapter 9, “Visual and Virtual Ethical Research: Captured Forever,” my coauthor and I present cutting-edge areas of visual and virtual human research where basic ethical issues are still being thought through. This might be primarily due to the capturing of human images and dynamic advances in technology. Each chapter, while focused on specific groups or issues, shares overlapping themes and areas for future thought that may easily be brought to bear on the research areas of the readers. The appendices provide both a model of how one might begin to write a research ethics stance and specific examples of ethical issues with people who are indigenous, people with memory issues, and Internet research ethics. Importantly, as readers engage with these chapters they will see researchers in the process of becoming culturally responsive and an increased understanding that in the words of Hamlet, “We know what we are but know not what we may be.”

5 ETHICAL RESEARCH WITH CHILDREN Always Othered?1

Y

 ou run like a girl, cry baby, don’t be a baby, stop acting like a child, still wet  behind the ears, snotty-nosed kid, what a big baby, he is in his second childhood, babified, infantile, puerile, juvenile, grow up, act your age and not your shoe size, be a man. In a powerful treatise, Beverley (2000) conceived of the relationship between researcher and the researched as “constructed out of the opposing terms of a master slave dialectic: metropolis/periphery, nation/region, European/indigenous, creole/ mestizos, elite/popular, urban/rural, intellectual/manual, male/female, lettered/ illiterate . . .” (p. 562). In this chapter, I am extending Beverley’s conceptualization specifically to children where the tension is more striking since, typically, children do not have the same rights as adults both legally and in institutions such as school (Masson, 2004). In keeping with the master slave dialectic, children as competent (Graue & Walsh, 1998) yet vulnerable (Liamputtong, 2007) people, are researched by persons socially more powerful. Children who are racially diverse minorities, of lower classes, or disabled are being investigated primarily by white, able-bodied researchers who hold power positions in society. Thus, the following expressions arise: “doubly vulnerable persons” (Moore & Miller, 1999, p. 1034), “multifaceted vulnerability” (Radley et al., in Liamputtong, 2007), “overlapping marginality” (Liamputtong, 2007, p. 4), and “intersecting marginalities” (Lahman, 2008). Childhood as conceived of by adults is a word or world fraught with stereotypes and polarization. Heywood (2001) reminds us “childhood is of course an  A n earlier version of the chapter was published as Lahman, M. K. (2008). Always othered: Ethical research with children. Journal of Early Childhood Research, 6(3), 281–300.

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abstraction, referring to a particular stage of life, as opposed to the group of persons implied by the word children” (p. 10). There is a tendency for childhood to be romanticized or vilified. Along with the negative list of sayings I opened this chapter with, consider the following list of dichotomized terms: big/little, tall/ small, large/tiny, developed/developing, mature/immature, majority/minority, and grown/growing. The inventory would not be complete if I excluded romanticized sayings: smooth as a baby’s bottom, childlike innocence, baby face, sleeping like a baby, fountain of youth, and forever young. Finally, Kellett and Ding (2004) point out that adults have a “preoccupation with age labeling” children: How children must tire of adult introductions prefaced with “and how old are you?” Adults refer to children’s ages in a seemingly unceasing fashion “she’s rather small for eight”, “he doesn’t eat much for ten”, “she’s a marvelous reader for six.” (p. 161) Under the weight of these terms, the child/adult relationship seems not only Othered, but inescapably dreadful. Yet with thoughtful, consideration children and adults may enter into joyous, intersubjective, meaningful relationships. In this chapter, I argue children comprise one of the few cultures that in all cases are always Othered or remain unfamiliar and different in research. The child as Othered in research is intensified first by adult memory of childhood, second by the close proximity and overlapping nature of child and adult cultures, and third by power adults have over children due to size and age. Robinson and Kellett (2004) have called the first point a matter of generational issues. I would add adult memory is an area fraught by the erosion of time (Eby, 2006). Fine and Sandstrom (1988) have referred to the second issue as one of children and adults being physically close, yet socially distant. The third issue has been discussed by Mauthner (1997, p. 19) as “intergenerational inequalities” and “the power dynamics of age.” Therefore, it may well be that the moment we feel our research has captured an understanding of childhood we are on the shakiest ground. As long as we remain in a posture of questioning findings, reflexively considering the research process, acknowledging the influencing power of our childhood memories over research interpretations, and respecting children by checking back with them whenever possible, we are on firmer ground. Children were chosen as the focus of one of the exemplar chapters on research ethics due to being a group that is frequently designated as vulnerable in research and an area I specialize in and focus on attempting to becoming culturally responsive toward. In the sections that follow, I briefly review images of children, present a brief discussion of what it means to be Othered, and consider the influence of adult memory. I then review how researchers have sought to position themselves in relation to children. Finally, ethical and methodological recommendations for minimizing or utilizing the researcher–child Othered relationship are set forth. I interrupt the chapter with narrative apercus throughout where I reflexively narrate my own childhood, personal research, and teaching

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and mothering of children. Narrative may allow “a deeper view of life in familiar contexts: it can make the familiar strange, and the strange familiar” (Clough, 2002, p. 8). “Stories lived and told educate the self and others, . . . including researchers . . . ” (Clandinin & Connelly, 2000, p. xxvi). Perhaps we will be educated.

IMAGE OF A CHILD Throughout history, evolving conceptualizations of early childhood have led to childhood’s characterization in differing ways from sinful child, romantic child, to child as a blank slate (Heywood, 2013). It is important to state at the outset of this section any brief discussion of child image will only cover major beliefs in the West and all the images are at an intersection with gender, race, class, ability, age, and additional positioning or what Davis (1998, p. 326) has called “a variety of childhoods.” It is important to avoid considering children as a single group. This tendency has been critiqued by some researchers as representing children “as possessing one homogenous voice or culture” (James et al., as cited in Davis, 1998, p. 326). Heywood (2013) reminds us childhood is a social construct. While biologically children are in a developing state, the understandings of what that state (child) means varies from group to group and are impacted by socio-historical, economic, geographical, and cultural contexts: “Childhood is thus to a considerable degree a function of adult expectations” (Heywood, 2001, p. 9). Heywood (2013) argues child images did not occur in a linear manner with one image succeeding the other in historical succession. Indeed, some of the images, such as sinful child, remain with contemporary society even if one hopes sinful child is not the dominant view. Heywood believes it would be helpful to consider historical themes of childhood such as depravity versus innocence and nature versus nurture as occurring in a cyclical nature and at times coexisting. Maria: We were preparing to participate in a march on Martin Luther King, Jr. Day when my son, also named Martin, said, “You know Mom, what the major freedom issue will be when I’m older?” I puzzled over his question. “I’m not sure, Martin. We have a lot that still needs to be done for people’s rights.” “It is going to be children’s rights,” Martin replied firmly. “I think you are a great mom, but I am like a slave to parents. I don’t have rights.”

CONTEMPORARY IMAGES OF THE CHILD Two major differences in contemporary childhood are, first, in wealthy countries with the advent of modern day psychology and child labor laws, children

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become at once “economically worthless” and “emotionally priceless” (Zelizer, in Heywood, 2001, p. 27). Second, children are inserted into adult worlds at a much slower rate and spend the majority of their time in child worlds such as childcare and school (Heywood, 2001) thus extending the period of dependence or childhood well into young adulthood for many advantaged youth referred to as extended adolescence or emerging adulthood (Arnett, 1997, 2000). These changes are also inextricably linked to what has been called the New Childhood Sociology (Corsaro, 2005) and The United Nations’ Convention on the Rights of the Child (“Course: Child rights and why they matter,” n.d.). Over 40 of the articles address specific child rights, which may be summarized in four overarching principles: (1) non-discrimination, (2) best interests, (3) participation, and (4) survival/development (“Course,” n.d.). Corsaro (2005) calls the contemporary setting a new history of childhood, citing a significant change in views of childhood, being children are now considered active agents in constructing culture with influence on the history of society. Modern understandings point to the child’s active role in constructing who they are. For example, at one-time educational ethnographers were primarily interested in studying cultural transmission to children. Today the emphasis of study includes a sense of reciprocity that acknowledges the child’s active role in acquiring culture (Lahman & D’Amato, 2007). “Children must be seen as active in determining their own lives and the lives of those around them” (Heywood, 2001, p. 4). One can see how the new sociology of childhood and children’s rights overlap in areas such as research participation. Davis (1998) compiled a helpful analysis of how children have been and are represented in contemporary research. He set forth three categories, which may be summarized as (1) tribal child (James et  al., 1998); (2) macrosocial child; and (3) varieties of child. The tribal child is represented in constructions of child that attempt to be universal with research findings applied to all children. The macrosocial child tends to be analyzed and represented at the level of group characteristics such as girls, elementary school children, or street children. While an improvement from the notion of tribal child, this type of representation still has an underlying belief in universals where children with similar characteristics are treated as the same. Finally, researchers considering varieties of child attempt to illustrate children’s lives as delightfully varied and complex with children who hold similar characteristics as possibly differing from one another in important ways. Another contemporary tension around the image of the child is the seemingly incompatible images of vulnerable child or capable and competent child. The vulnerable child is depicted in countless images such as government regulations detailing how children may be included in research, media images of impoverished, starving children (Kellett et al., 2004), and news accounts of child abuse, truancy laws, and the plight of children of undocumented immigrants. The image of the capable and competent child has been admirably advocated by multiple contemporary researchers and theorists (e.g., Alderson, 2004; Fraser,

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2004; Kellett & Ding, 2004; Masson, 2004) and is central to the new childhood sociology and United Nations child rights. As discussed in Chapter 2, I believe both the notions of capable/competent and vulnerable, worded as capable and competent yet vulnerable child may be held simultaneously as a way of considering the unique position of children. Children are vulnerable due to their physical size, relative strength, and developing abilities to access needed resources (food, shelter, money). This is readily apparent when including the image of infant in the discussion of child, which is rarely addressed in child methodology. Dockett and Perry’s (2007, p. 48) description of their research is an example of the notion of capable and competent yet vulnerable. [T]hey [the researchers] seek to promote children’s involvement in ways that recognize the competence of children and emphasizes the importance of the perspectives of those living the experience. . . . These processes are set within risk-conscious societies, where the safety and protection of children are major concerns to the adults who exercise protective responsibilities. I am thankful society tries to have in place protections for this vulnerable group. Yet I believe firmly in young children’s capability and competency. Strikingly, through all the varied images of child whether as sinner, innocent, vulnerable, capable, or competent is the constant underlying message that regardless of best efforts, child is Other to be theorized and articulated by adult. Maria: As I am conducting research with children, I think about Joey, a boy with whom I attended elementary school. I realize I have unintentionally given a child who is usually physically dirty the pseudonym Joey. I wonder how does the educational community work with these Joeys? Do they ignore their neglected condition? What memory has unconsciously stirred as I have reflected on the “Joey” in my research that brought forward the name of Joey, my classmate, into my mind then onto my computer screen? My classmate Joey was obese, with greasy curly hair, skin covered in grime, and dirt under his fingernails. He frequently wore the same clothes for days in a row and always had a smell that announced his presence. If at all possible, classmates shunned Joey. Usually, Joey tried to interact with his female peers by leering at us, making rude comments, and laughing at our mistakes. I remember one of my last close encounters with Joey when I was in the sixth grade. I picture him leaning across my desk whispering to me, “I have fuck written on the wall of my bathroom at home. Your parents do it in bed at night.” “No they don’t,” I answered angrily to his delight. In my childish way, I confidently thought my parents could do nothing written on Joey’s bathroom wall. Already a young researcher, I wrote the word Joey had whispered on a small piece of paper, and carried it around burning a hole in my pocket as I worried about someone discovering Joey’s word on my person. At home that night,

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I looked up the soiled word in our family dictionary. As I waded through the definitions of the obscenity, I had to eventually acknowledge Joey was right. My parents probably did something similar to the word. Mom had told me about this special parent encounter, but in veiled reverent wording, certainly nothing I had conceived of being written on a bathroom wall. However, I knew our family was clean, and Joey was dirty, so somehow we must be different. The next vivid memory I have of Joey has been a leveling story that stayed with me all my life, coming out at times to remind me that clean and dirty are powerful yet superficial characteristics only. I was an athletic child that liked to win . . . a lot! We were playing dodge ball at school, which was one of my favorite games. I was highly competitive, quick, and light on my feet and could be guaranteed to be almost the last child in the game. Now as a fat adult, I think about Joey and this game. He was slow, and awkward, and not someone anyone minded putting out of the game. Participation was mandatory for all children. I suspect these times were rough on him, and he hid his feelings by being belligerent and yelling nasty comments as we played. In the midst of play, suddenly the unbelievable happened. Joey had thrown the ball at me, and I felt it brush my clothes. Even as he was yelling, “Maria’s out,” I was scooping the ball up and hitting him squarely in the stomach with it. Our teacher told him to stop yelling and go sit on the sideline. Who would a teacher believe, Joey or Maria? I continued with the game not acknowledging Joey’s claim that the ball had brushed my clothes. I can see him now slumped against the gray green metal radiator, face in a scowl, sweat, and maybe a tear tracing bright lines across his dirty skin. My moment of victory was short, but a lifetime of guilt is long. I would like to tell Joey how I have carried this narrative throughout my early childhood career and personal interactions in a manner that has informed my practice in ways that honor him. I attempt to support the Joeys as people who are “clean” and on equal standing with the Marias in the class.

CHILDREN AS OTHER As discussed extensively in the first half of this book, an issue of importance in research is the positioning of the researcher and researched as Othered from each other. Eder and Fingerson (2002, p. 198) ponder the idea “. . . children are perhaps the least powerful Others.” Nutbrown (2011) has noted, “Ethical governance procedures promote ‘protection’ of participants and researchers. But we can do better than this if we look beyond ‘protection’ to a culture of caring, vigilance, sensitivity and, fidelity” (p. 11). These are vital goals, yet I am proposing that even the most understanding, sensitive, early childhood researcher

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cannot fully achieve a relationship that is not Othered, between child and adult, researched and researcher, due to inherent differences. In essence, the child will remain always Othered. Much of research has recolonized the participant as Other and perpetuated what is already believed about the Other (Fine, Weis, Weseen, & Wong, 2000). Research may be utilized to better control the Other rather than understand or improve the Others’ lives. While this discussion takes place regarding adults, consider how true it is of children. Research areas of keen interest with children continue to be management and control of children’s bodies and minds (Tobin, 2008).

NATURE OF ADULT MEMORY Christensen (2004, p. 166) has suggested early childhood researchers must also ask the question, “What is an adult?” She points out adult “as a social and cultural category remains relatively unexplored and unproblematized.” For example teacher, parent, or researcher are all different adults that children relate to and one adult may hold all these roles. An important aspect of adult is the nature of adult memory, and all adults have been children, thus holding clear pictures of what childhood was for them. In the area of early childhood research specifically, Thorne (1993) has said, “memories are also fragile and mysterious, continuously reconstructed by the needs of the present and yearnings and fears of the past. Memories can distort as well as enrich present perceptions” (p. 26). As depicted in my narrative of Joey, Thorne (1993) believes we may use what she has called “tugs of memory, and the child within” (p. 23) to help understand our tendency to be in certain positions within a group of children and deliberately attempt to view the research from other perspectives. In her research, Thorne came to see she recalled school as a child within the middle of the classroom hierarchy and notably began to deliberately attempt to view her research from the perspectives of children who were at other levels. Memory is a vast area of study, including areas such as instant recall, autobiographical memory, collective memory, contested memory, and memory’s relationship to emotions (Multhaup et al., 2005; Schwartz, 1996; Sheen et al., 2006; West & Bauer, 1999). Schwartz (1996) highlights some of the questions in memory research such as, [Is memory] constructed or retrieved reality, contested or shared, rooted in historical knowledge or commemorative symbolism, revised or unchanged as one generation replaces the next, a mirror that reflects the concerns of society or a lamp of practical guidance and moral precedent. . . ? (p. 278) The nature of adult memory is one of the reasons children are commonly Othered by adults. Therefore, a researcher’s positioning as adult is perilous when it comes to memory. Research has shown adults may have disputed memories

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with siblings or twins where both adults recall themselves as the protagonist of a memory with the exact same details. This highlights the “question whether many of us might have memories that have been stolen from others (or sometimes given away to them) for self-serving reasons” (Sheen et al., 2006, p. 12). As we live our lives and tell our stories we construct and reconstruct memories thus creating new memories (Clandinin & Connelley, 2000). Adult experience, development, and the nature of memory precludes us from ever recalling childhood as a “fact” (Schwartz, 1996). Memory itself is called into question as we navigate the terrain of child research. In the larger field of memory work, two specific areas of study are relevant to this discussion. The first, as previously discussed, is the socially constructed or reconstructed nature of memory (Anderson et  al., 2000; Schwartz, 1996). According to the current research, the contents of human long-term memory are dynamic (not static). What we then “remember” it turns out, is not the original event itself but some endless variant, ever changing in the light of experience (Ullman, in Eby, 2006, p. 35). The second area of relevant study has been termed childhood or infantile amnesia (Multhaup et al., 2005; West & Bauer, 1999). Childhood amnesia is “the period of one’s life for which one may know about events without having personal recollection of the events” (Multhaup et al., 2005, p. 161). Typically, adults do not recall life prior to the age of 2. After age 2 until around age 5 the average adult may recall major memories such as the birth of a sibling or trauma. These memories are typically emotionally charged and recalled in third person (West & Bauer, 1999). Other childhood memories are reconstructed through the use of family artifacts, photos, and parental storytelling and may seem to be actual recollections. Research has shown adults may not remember anything about childhood until around four and a half years of age. It is vital to reflect actively on the childhood memories we feel we bring to the field for as Eby (2006) has said, The attempt to achieve the honest shape of an earlier life is hard work. Even when one resists the seduction of self-deception, self congratulation, sentimentality, and narcissism, chaff gets into the grains of winnowed memory. One must constantly puff at such chaff to gain the truthful sheen on the historically-reconstituted self. (pp. 35–36) Maria: When I last taught preschool, I was as close to a group of children as most likely I will ever be: I am sitting on the cool bank of a cement culvert watching the 4-year-olds I teach play. Voices drift to me as children call to each other so intent on their play, the adult presence seems merely a backdrop. The children have spent the year playing in the culvert while a new playground was erected. The unconventional culvert playground initially concerned parents, but I soon realized I was witnessing far more intense, creative, dramatic, and powerful play at school than I had ever or have ever since observed. The cement culvert plunged off a 3-foot-wide, neatly

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trimmed strip of grass bordering a parking lot. The culvert was over 2 feet deep and 5 feet wide with sloping walls some children initially needed assistance clambering up and sliding down. Lofty pine trees shaded the upper part of the culvert, and a metal service vehicle bridge spanned its width. Countless games of Billy Goat Gruff were enacted as children nimbly “trip-trapped” over the bridge, while multiple trolls hunched under the bridge ready to spring out and confront the saucy goats. Children climbed low branches of the pines, scraped sticky sap redolent of pine off the bark, collected pinecones, stacked small twigs into “fires,” and conducted elaborate fantasy games. One of my most vivid memories is when children found a cat which had been dead for so long it had decayed into something resembling a leather hide. Rich discussions about germs, death, decay, and the hereafter ensued. When the formal playground was finally finished in late spring, the children preferred the culvert to the shiny, age appropriate, safety-approved playground. We began to vote before we went out to play and many days saw us in the culvert re-enacting my memory of a childhood unrestricted by fear for children’s safety. This story may be a compelling narrative of children being allowed to muck around in nature, but what does it truly tell us about childhood that is not filtered through dappled memories of my childhood days spent in the neighboring forest and apple orchard?

RESEARCHERS’ METHODOLOGICAL POSITIONING TO CHILD It is heartening to note the waning of the historical dearth of methodological resources in relation to research with children. Two decades ago, Mauthner (1997) pointed to the lack of empirical and theoretical literature on childhood. These following decades have begun to see a surge in methodological articles and book publications that also problematize accepted notions of who the child is and what their positioning to researchers might or should be. The purpose of this section of the chapter is to consider the roles researchers have advanced in order to relate authentically to child Others, or what I have called positioning of an adult researcher with children. I emphasize positioning since it has a mobile feel suggesting a constant dance of reciprocity between adult and child as they negotiate their research relationship. Graue and Walsh (1998) make a strong case for researching children in their natural context as a way of reducing the sense of strangeness encountered in the traditional research laboratory setting. Graue and Walsh (1998, p. 57) note that the relationship between the child and researcher is an “upside-down world” where a child is being asked to teach an adult. As researchers have negotiated what it means to be an adult attempting to enter children’s worlds on the terms of the children, a variety of positionings have been

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developed and recommended. Corsaro (1985, 2005) detailed the reactive role he employed when entering groups of children, where he would wait for children to interact with him and invite him into their lives. Thorne (1993, p. 14) reflected that she was an adult visitor who fully took advantage of this role coming and leaving the site when she wished. She also attempted to remove her role from that of a mother or teacher by not applying discipline unless someone was going to be physically hurt. Fine and Sandstrom (1988) have advanced the position of adult friend. Mandell (1988) suggests taking the least adult role. While this term has great possibilities, Mandell has received criticism for neglecting to address children’s understandings of researchers as different from children. Christensen (2004) has said, This strategy [least adult] must be commended for its wholehearted effort to enter into and participate in children’s social relations but is open to the criticism that it seems simply to wish away the complexity of the differences and similarities between children and adults as they are currently constituted. (p. 173) Christensen (2004, p. 174) has described her researcher role as an unusual type of adult or a different type of adult who is interested in children’s perspectives. She avoids “making a dubious attempt to be a child.” Christensen (2004, p. 173) adds adults need to carefully consider the different “versions” or representations of “what an adult is” or what I would call, building on Davis’s (1998) notion of the varieties of child, the varieties of adult. The positioning of researcher as a variety of adults in relation to the children they research allows for multifaceted, changeable relationships in the research site with a variety of children who will invariably perceive adults in different ways. Wolcott’s discussion of a teacher as an enemy to children (Spindler, 1997) is an important example of regardless of how we try to position ourselves, children interpret our role, thus there is an array of roles that may confront a researcher. Dorner (2015) reminds us No matter what choices are made in the context of a study, it is important to remember that adults’ choices matter: language, clothes, gestures, and the context all shape how children view researchers as “least adults” or something else (Phelan & Kinsella, 2013). (p. 359)

SUGGESTIONS FOR EARLY CHILDHOOD RESEARCHERS Once we acknowledge our state of perpetual Otherness when conducting research and consider the many research positioning possibilities with children, where do we go from here? I will discuss six major areas around ethical considerations and

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how to be responsive to this distinct and diverse culture: assent process, maintaining a reflexive stance, developing a sense of intersubjectivity, utilizing innovative research methods, treating children as the experts they are, and being with children. See Box 5.2 for possible ethical issues to discuss.

Ethical Considerations It is imperative to note the underlying concern for ethics in any discussion of participant as Other. Graue and Walsh (1998) stated, “To act ethical is to act the way one acts towards people whom one respects” (p. 55). Schwandt (2000) adds, when one takes a relational research stance “the ethical relationship is grounded in the notion of being-for the other” (p. 205). This concern becomes particularly compelling when the researched also falls into the legal category of vulnerable in research (Liamputtong, 2007). A review of the early childhood literature reveals that researchers believe the ethical issues they encounter are similar to those with adults but are mediated by the child/adult power deferential (Dockett & Perry, 2007; Greene & Hill, 2005; Mauthner, 1997; Thomas & O’Kane, 1998). Major areas of consensus for ethical consideration with children include informed assent, confidentiality (Davis, 1998; Dockett & Perry, 2007; Mauthner, 1997; Thomas & O’Kane, 1998), access, and privacy (Mauthner, 1997). Excessive oversight by research review boards is also an area of ethical discussion with some feeling that “vulnerable” groups such as children are at risk for being underresearched due to unnecessary restrictions (Harcourt & Quennerstedt, 2014; Hill, 2005; White, 2007). Researchers may also avoid sensitive research areas or make their research designs simplistic to streamline research approval (Balen et. al., 2006; Harcourt & Quennerstedt; 2014). Writing from Swedish and Australian contexts Harcourt and Quennerstedt underscore the concern of research ethics reviews of proposed research with children with intersecting marginalities stating if research about children in vulnerable/priority circumstances is constantly rejected, or takes an inordinate amount of time to review, the knowledge about children’s lives and situations will be poorer, and society is deprived of knowledge that might be decisive in improving the lives of these children (Sargeant & Harcourt, 2012). In addition, this means that some children are excluded from research and denied space in the production of knowledge. (p. 6) Graue and Walsh (1998, p. 57) state three assumptions researchers should bring to ethical research with children that acknowledge children’s competence. Children (1) are smart, (2) make sense, and (3) want to live a good life. Thomas and O’Kane (1998) advocate for respecting children’s expertise as an ethical and methodological stance throughout the research process. This implies the need to be responsive and reflexive regarding ethical issues over the course of the entire study.

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Child Assent to Research How a researcher attempts to position himself or herself in relation to a child during research may also impact how the researcher conducts the assent process. Assent is the child’s right to agree or disagree to be in a research study. Assent unlike consent means a minor may agree to be in a study even though he or she may not developmentally have the capacity to understand all the implications of their agreement (Traube et al. 2013). The assent process is a reflection of the increased emphasis on children’s right to agency and address some minimal aspects of my son Martin’s concerns reflected in a brief narrative in this chapter. In relation to assent there is much variation by country. For example, in the United States, there is not a given age of assent. However, IRB regulations around assent stress researchers needing to consider minors’ age and developmental and psychological maturity in understanding what assent is, while in most regions of Canada, assent by children to be in research must occur through age 16. There is a helpful link for the European Union that shares information by country regarding children in research, including consent and assent—http://fra.europa.eu/en/theme/rights-child/childparticipation-in-research. Assent may be seen as when a child agrees to be in a study, but researchers should be cautious not to misconstrue the lack of an expression of dissent or assent as meaning a child wishes to be in a study (Constand, Tanel, & Ryan, 2014, p. 17). While these are laudable ideas, I am always left with some unresolved concerns. The first being, can a child truly understand what it means to be in a research study and represented in resulting publications when I myself as an adult who is a researcher have been quite taken aback by aspects of studies I have agreed to be in or reactions of readers or unanticipated reaction by myself to research I have authored? The second, surely there are deeply held cultural views by groups who would not be able to participate in assent in the way the Western world conceives of it. For more on this issue, see the section on consent in Chapter 4. Examining the second issue further, assent is a legal right and thought to be fundamental in Western autonomous cultures; however, in some cultures that are community oriented, children assenting is not recognized. These cultures also exist as subcultures among dominant cultures that believe in child assent. In a research study where researchers spoke at length with naturally existing community meeting groups in Kenya called Mabaraza in a sort of focus group parent and guardians were thought to be the correct people to consent, without assent, for a child to be in a study along with numerous other people (e.g., educators, siblings, religious leaders, occasionally child themselves). One person highlighted this idea of consent by stating community is family. Assent was not considered, and both this study and past research revealed community members assumed that children would agree with parents and elders’ wishes (Vreeman et al., 2012).

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A Reflexive Stance Researchers in general (Finlay and Gough, 2003; Hertz, 1997; Janesick, 1999) and early childhood researchers (Davis, 1998; Mauthner, 1997) have advocated for the need to conduct research reflexively. See Chapter 2 for more discussion of this construct. As noted earlier, Finlay and Gough (2003, p. ix) have said the root of the word reflexive means to “bend back upon oneself.” Reflexivity applied to research with young children highlights the need for a deep awareness of the intersubjective relationship between child and adult. Reflexivity requires critical self-reflection of the ways in which researchers’ social background, assumptions, and positioning behavior impact on the research process. Therefore, researchers are encouraged to grapple with issues reflexively in their research journal (Janesick, 1999; Park & Lahman, 2003). Reflexivity can be a manner in which to scrutinize the entire research process, thus maximizing the validity of findings. Reflexive researchers understand they are not writing truths but instead are constructing interpretations to be probed and reconstructed (Hertz, 1997). Davis has said that early childhood researchers “may understand children by reflexively considering their own academic and professional perceptions,” and I would add childhoods, children, and/or child interactions. By reflexively considering these issues, we begin to engage with some of the assumptions we bring to our understandings of children and may be responsive to this near yet far culture. It is of note that we are cautioned not to slip into selfabsorption when reflexing and to keep our focus on the Other we are interested in understanding (Fine et al., 2000). However, the final gift when groping to understand the Other may be “we understand Self only in concert with Other, a continual dialogic process of negotiation and a great deal of faith in shared meaning” (Markham, 2005, p. 794). This gift may be seen implicitly in Fine’s (1994) call to “work the hyphen between the researched and researcher.” When applied to early childhood, researchers are asked to explore their own contexts and their impact on the study in an effort to “avoid seeing the researched as a distant and separate Other” (Eder & Fingerson, 2002, p. 198), thereby allowing researchers to be more honest in data interpretation and representation. As the interaction between the researcher and child is examined, the cultures of both parties are revealed. “The very existence of differences can be used to develop understanding through reflexivity” (p. 331).

Intersubjectivity In the previous section Finlay and Gough (2003) use the word intersubjective to describe reflexivity. These two terms are entwined but bring different nuances to the child–adult research relationship. While reflexivity emphasizes a possible research stance with children, the term intersubjectivty reminds us the child is a member in the relationship. We may be highly reflexive, but the child

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must meet us in some manner in order for research to occur. Much of the discussion of intersubjectivity in early childhood comes from the child psychology and child development literature (Bremner, 1994; Bruner, 1986; Rogoff, 1990). I believe researchers may benefit by considering intersubjectivity in relation to children and researchers. Rogoff (1990, p. 67) has said, “the mutual understanding that is achieved between people in communication has been termed intersubjectivity, emphasizing that understanding happens between people, it can not be attributed to one person or the other in communication.” She goes on to say, “communication presumes intersubjectivity . . . shared understanding based on a common focus of attention” (p. 71). Researching children as intentional beings using the method participant observation would be key to developing intersubjectivity or even just an easy rapport with children. Not all researchers or research designs will be able to utilize intersubjectivity, so it may be more practical to see this as an aspiration with some researchers needing to concentrate more on basic rapport. Alderson (2000, p. 18) has pointed out “rapport grows through enjoying shared experiences and through playful methods of inquiry.” Mauthner (1997) has similarly characterized the personal nature of research with children saying the relationship between the researcher and child is “a delicate process . . .  characterized by intimacy and negotiation” (p. 21). Christensen (2004) has advocated relating to children “primarily as fellow human beings” or “not treating children as in principle different from adults” (p. 165). I feel much may be gained by approaching a research relationship with this stance equally in hand with the idea of child as always Othered. Nutbrown (2011) has critiqued the stance of always Othered as a stop point or stopping place. I am appreciative of her input since it allows me to continue to process my view in light of other scholars. It also allows me to understand I have not fully articulated myself. Acknowledging children are Other is not positioning relational, responsive child research as futile or impossible. Instead, I see acknowledging children as always Othered as an unromantic, realistic approach that simultaneously honors the unique culture of childhood and that aspects of childhood will remain unknown, which I personally am glad of. Acknowledging the child will remain Othered is not the same as actively treating them as Other. In fact, the acknowledgment of child as Other is a step closer to understanding and engaging with children intersubjectively.

Innovative Research Methods When discussing the research participant as Other, Denzin and Lincoln (2000b, p. 19) have said, “. . . there is no clear window into the inner life of an individual. Any gaze is always filtered through the lens of language, gender, social class, race, and ethnicity.” Davis (1998) agrees, stating “There is no one research tool best suited to gaining children’s opinions” (p. 330). Denzin and Lincoln (2000b) go on to say the consequence of this marvelous muddle is “qualitative researchers deploy a wide range of interconnected interpretative methods, always

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seeking better ways to make more understandable the worlds of experiences they have studied” (p. 19). It is exciting and encouraging to be an early childhood researcher during a time when the use of innovative research methods is burgeoning. A word of caution: It is important for researchers to avoid getting caught up in method for method sake or what Janesick (2000, p. 390) has called “methodolatry.” In early childhood research, Dockett and Perry (2007) have articulated this as “tension between developing interesting methods to engage children, while at the same time avoiding a gimmick approach” (p. 50). As I argue later, there is much to be said for continuing primarily to observe children’s actions and interview them as experts. However, Liamputtong (2007) maintains, “There are some situations where no conventional qualitative method will work and can be alienating for some vulnerable people. It is essential researchers adopt unconventional alternative approaches” (p. 141). In this section, I will discuss ideas for altering traditional interviews. Then I will briefly review innovative methodologies. See Box 5.1 for an example of innovative research methods.

BOX 5.1. RESEARCH ETHICS VIGNETTE: SHOULDER-TO-SHOULDER RESEARCH2 Krista Griffin and Maria Lahman You are sitting on a love seat, rocking chair, stately wingback, bench, sidewalk. . . . The place does not matter. What does matter is the children who are clambering onto your lap, nestling against your shoulder, squeezing under your arms, or simply sitting beside you. These are the times–places, where thoughts, hopes, questions are shared–breathed into your ear. Even the painfully shy child eventually takes a place beside you. Are you listening? The above scenario depicts shoulder-to-shoulder research—researchers entering the world of children in ways that children recognize and waiting until the children are comfortable and speak to you. The term shoulder-to-shoulder was originally a pedagogical idea we liberally borrowed from the reading instruction literature. Shoulder, paired, or partner reading is a classroom strategy often used to facilitate the development of reading fluency (Meisinger et al., 2004). Meisinger et al. describe partner reading as a form of “cooperative interaction” (p. 117). This interaction begins with the first step of partner reading, which consists of the partners sitting next to each other, shoulder-to-shoulder, sharing a book. The shoulder-to-shoulder interview we developed is similar, with interviewer and interviewee sitting side by side, looking together at a book or other artifacts, or just companionably sitting. Our decision to bring the shoulder-to-shoulder tenet of partner reading into research began as a conversation about how Krista’s 9-year-old son was more apt to This textbox is an excerpt from journal article Griffin, K. M., Lahman, M. K., & Opitz, M. F. (2016). Shoulder-to-shoulder research with children: Methodological and ethical considerations. Journal of Early Childhood Research, 14(1), 18–27. (Continued) 2

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(Continued) share personal stories at bedtime after prayers with the lights off. Maria responded with her similar experiences with her children chatting from the back seat of the car. The common denominator seemed to be lack of direct eye contact, either with the lights off or the parent’s eyes on the road, and which may create an addi­tional level of comfort for the child. A search for other researchers reflecting on similar techniques did not produce any guidance, so we decided to add a methodological examination to the research that I, Krista was preparing to conduct. After parental consent and student assent was obtained, author interviewed four 7- and 8-year-old stu­dents individually in an unused classroom next door to the library. I told the students that I used to teach 5-year-olds, I’m comfortable sitting on the floor, and asked them whether they minded sitting on the floor for the interview. We sat with our backs against the wall, shoulder-to-shoulder, looking at books they brought with them from the library. We started each interview talking about their books, and then, the conversation would evolve into questions about reading and identity. Eye contact was not usually maintained, and the digital recorder was on the ground between us. This method produced the rich naturalistic data. Upon repeated and close review of the transcripts, I found that I was less conscious of myself as a researcher, and did not put the children in a situation Graue and Walsh (1998) have characterized with the question “Would you rather stay here and answer my clumsy questions or go have fun with your friends.” (p. 112). The children and I joked together and made little connections to our lives outside of the interview topic. An example of this can be found during my interview with Andrew, an 8-year-old boy, as he tells me about his reading. A: I was reading the Hardy Boys. It had such big words, but . . . was kind of easy. I just sounded them out and . . . if you couldn’t sound it out, I was kind of just guessing, but trying to get close to the word. Krista: And did it still make sense? A: Yeah. Krista: Do you know what else is true about Hardy Boys and Nancy Drew? They use words we don’t use anymore. A: Yeah, oh yeah, there’s just this one word, and I asked my mom what does that mean and she says I don’t know what that means. Krista: (laughing) Those books were written . . . in A:

I think it was like 1946?

Krista: I think it was the 40s and the 50s because I’m 41, and when I was little, I read those books. A:

My mom’s like 48 and she read them when she was little.

Krista: When my daughter Julia read Nancy Drew there were tons of words she didn’t know. One of them was icebox and that was for refrigerator. We believe the lack of eye contact and natural intimacy of sitting side by side with someone caused the children to be more willing to open up.

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There is some methodological literature on interviewing children (Gibson, 2012; Irwin & Johnson, 2005). Eder and Fingerson’s (2002) handbook chapter is a notable example. I believe it is always preferable to be with children in their context so naturally occurring conversations can occur in the settings of the children’s lives (Davis, 1998). However, there are times when due to time, money (Liamputtong, 2007), or the topic formal interviews may be needed. When moving to a formal interview the child/researcher power deferential is inherently emphasized and the researcher risks controlling the interview in a manner that produces what the child believes the adult wishes to hear (Nespor, 1997). Researchers may wish to allow the child to choose where they want the interview to occur, allow the child to handle the recording equipment, and to hear their voice recording (Irwin and Johnson, 2005; Kay et al., 2003, Nespor, 1997). Interviewing children in focus groups, or with a friend(s) (Christensen, 2004; Nespor, 1997; Mauthner, 1997), what Mauthner (1997, p. 23) has called “friendship groups” can be a means to empower children. Lewis (1992) has said when conducting focus groups, friendship may be the most important factor for composing groups. “Children talking together replicates the small group setting that they are familiar with in the classroom where conversations seem to flow effortlessly” (Mauthner, 1997, p. 23). A child could also lead the focus group (Lewis, 1992) with adults being present in a listening role. Encouraging children to interview their friends as researcher is also a way to minimize the researcher’s power (Christensen, 2004; Nespor, 1997). Citing examples of children commandeering the audio recorder to insult each other, narrate a field trip in a newscaster style, and sing songs Nespor (1997, p. 232) says, “My point is that using conventional one-on-one interviews would have meant missing most of the kids’ ways of expressing themselves.” Thomas and O’Kane (1998, p. 342) suggest allowing children to choose whether they wish to express themselves through an innovative method: “[S]ome of the children we saw were keen to express themselves by drawing while others had no interest in this method of communication.” Examples of methods successfully utilized with children include photography (Berman et al., 2001; Dockett & Perry, 2007; Wang, 2007), video (Rich & Chalfen, 1998; Walker, 2003), Internet communication (Wang, 2007), communication with toys (Davis, 1998); drawing (Davis, 1998; Dockett & Perry, 2007; Irwin and Johnson, 2005; Mauthner, 1997), mapping (Nespor, 1997), role playing (Irwin and Johnson, 2005), and art (Griffin, Lahman, & Opitz, 2014; Liamputtong, 2007). Clark (2004) advocates for combining these methods as appropriate into what she has termed the Mosaic Approach. It is of note that many of these methods will not work with our youngest participants such as infants3 and toddlers, or children who are severely disabled (Correa-Torres, 2004). For example, “the diary method may not be suitable for people [children] who cannot write or have difficulty articulating their feelings in writing” (Liamputtong, 2007, p. 154). Over the course of one academic year, I took part in over 60 naturally occurring snack time conversations with 5-year-olds in a public school, half-day  See Alderson (2000) for an intriguing example of research with babies.

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kindergarten classroom. Children self-selected into my focus groups by choosing their own snack time seat. Groups ranged from four to six children, and the conversations lasted 10 to 20 minutes. The entire class ate snack at the same time. Typically, children left the snack group as they finished their snack. At the beginning of the year, the children engaged in conversation as they normally would and I only participated when asked direct questions. As I began to develop a rapport with the children, and when it seemed appropriate, I would introduce topics of conversation or build on existing topics to elicit data. While the children ate and chatted, I transcribed conversations onto a laptop computer. This data collection technique yielded rich, contextually relevant information in areas as diverse as disability, nutrition, friendship, reality/fantasy, and family life. The following is an example of children naturally preparing others for a developmental milestone: losing a first tooth. Meg brought a little film canister to the snack table and opened the lid reverently to display a tiny white tooth. John, who was busily eating, stopped to admire the tooth and started to speak in excited tones. “You should put it under your pillow!” Meg said, “I already did. I left the Tooth Fairy a note that said, ‘Please leave my tooth. Please don’t take my tooth. Leave money and a little stuffed kitty.’ The tooth fairy did it all. She left five gold dollars.” John, seeing that Meg was a voice of experience posed an important question, “Did it hurt when your tooth came out?” While Meg did not think it hurt too much, Madeline interrupted shaking her head dramatically, “Yeah, it hurts super bad. They pull it and it bleeds. It really hurts because either you have to pull it out or your mom has to.” Ama, a tall girl, added, “I have five grown up teeth. You can’t see the holes anymore.” Curious about the children’s conceptions of the tooth fairy, I asked John, “What happens when you put a tooth under a pillow?” “You’ll get millions of dollars so I can get a Jurassic Park toy,” he answered. Although I posed the questions in several different ways, the children did not question the existence of a tooth fairy.

Children Are Experts Denzin and Lincoln (2000c, p. 1050) have noted one way to understand more clearly the Other is to “move to include the other in the larger research process we have developed. For some, this means participatory, or collaborative, research or evaluation efforts.” Research where one collaborates with the participants has flourished with adults (Denzin & Lincoln, 2000c) and is beginning to be utilized more with children (Liamputtong, 2007, p. 32). “These practices involve collaborative dialogue, participatory decision-making, inclusive democratic deliberation, and the maximal participation and representation of all relevant parties” (Denzin & Lincoln, 2017 p. 27). It is important to consider the use of the term research with children rather than on or for children as a way of highlighting child expertise and the ability to collaborate. “In the past, much research was conducted on children but relatively little with them” (Masson, 2004, p. 4). In a related vein Mauthner (1997, p. 17)

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has called for child-centered research and sees children as “subjects and not objects.” The literature also reveals a discussion of whether research has been on or for children (Oakley, in Mauthner, 1997). According to Dorner (2015), Although a number of reflections on research with children attend to issues that fall under procedural ethics and ethics in-practice, fewer researchers reflect upon what happens toward the end of their projects, after data collection is complete. Of those who do, scholars have noted that children are usually left out of analytical processes. (p. 360) Thomas and O’Kane (1998) have also advocated for providing children with opportunities to interpret data and reflect on tentative findings. They have implemented this idea through follow-up interviews and focus groups where findings and data previously collected are brought to the children to discuss. I would add that portions of written accounts might also be shared with children who can read. Similarly, Kay et al. (2003) has characterized this as (re)presentation, meaning that child participants are presented with representations of research data to gain their input so the researcher may (re)present their data as informed by the children’s input. Along with giving children accessible written reports of findings Kay et al. (2003) “invited participants to a dance workshop led by a professional dancer where they were encouraged to act out some of the feelings that the research had thrown up for them” (p. 51).

BOX 5.2.  ETHICAL DILEMMAS WITH CHILDREN When you are with children, ethical dilemmas will arise, which seem heightened by children’s power differential with adults. I provide just a few examples, from research I have conducted, for discussion purposes. • A very young child participant is walking through the school with you, and a much older child curses her harshly when she accidently bumps into him. • You hear a child tell his teacher an older cousin is inserting something in his rectum. • Teachers tell you confidential information about students and colleagues. You realize this is probably because you are seen as a professor “resource” who can provide advice. • When a child initially blithely says no to being in your research study the teacher/witness says, “Here use this set of new crayons,” and then asks for assent again to which the child says yes. Both answers seem to have little meaning. • As a participant observer researcher, you are asked to tutor a child with a stultifying reading curriculum of the sort that initially caused you to seek higher education and move out of children’s classrooms.

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Being With Children Finally, and arguably most importantly, make time in one’s research design to simply be with children. I end with this section because all the previous sections are enhanced including the possibility of becoming culturally responsive if the time researchers spend with children is extensive. As discussed earlier, since childhood is a culture that is physically near yet socially far, the best way to be culturally responsive is to take time to dwell within the culture and acquaint yourself with the ways the child culture of your interest works. With time, ethical consideration may be enacted reflexively. With time, multiple episodes upon which to draw upon and intersubjective relationships become possible. Innovative methods rest on relationships and are not conducted frivolously, and children can demonstrate their true expertise as collaborators. Time and money are two of the most difficult issues in research to overcome (Liamputtong, 2007), which is perhaps why we see few powerful ethnographic or longitudinal designs with children. I believe the most recent, novel methods are still not as powerful as simply being with children. When at all possible implement what Wolcott (1995) has called hanging out, looking over one’s shoulder, and being there. When one is hanging out with children researchers can employee naturally occurring conversations to minimize disruption of children’s lives and gain context laden accounts (Davis, 1998). Since it is difficult to gain access to children due to the many layers of gatekeepers protecting them, consider developing research designs where once access is achieved, the researcher stays in the site for several years conducting longitudinal, ethnographic, or holistic studies (Buchbinder et al., 2006). Researchers have successfully utilized these types of design to provide valuable full pictures of children’s lives (Lareau, 2000).

ALWAYS OTHERED Acknowledging the child is always Othered should not stop researchers from attempting to form meaningful ethical relationships with the children they research. Indeed, if we reflect overly long on this issue the danger becomes one may say, “Then why bother?” It is my hope that early childhood researchers are drawn to studying children through some intuitive sense of desiring to see the world through children’s eyes, attempting to improve children’s lives, and simply experiencing joy when with children. If so, let us attempt to enter the world of this most special Other and see what we can discover and who we can become.

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Reflexive Questions The following questions will help us to engage with negative and positive biases we have about children and childhood.   1. What memories from your childhood may impact you when you research children? •• What gave you joy in your childhood? •• What caused fear in childhood? •• What was school like for you? •• What was your home life like? •• How did the adults in your life interact with you?   2. Why do you wish to research children?   3. How would you characterize your childhood?   4. What romantic or negative ideas of childhood do you hold?   5. What characteristics do you represent (age, gender, race, class, ability, religion, nation)?   6. What was your disposition as a child?   7. What were/are the childhoods of significant others such as (parents, partner, children)?   8. What varieties of adults do you represent?   9. What tenets of professional disciplines influence you? 10. What applied experience with children do you bring to the research site? 11. What are appropriate situations in which to question children? 12. What is gained or lost by a traditional interview? 13. What is gained or lost by an informal interview? 14. What is gained or lost by an interview in the child’s contextual setting? 15. What ethical issues have occurred in your research with children? How did you handle these issues? Additionally, Dorner (2015) asks herself three questions, which I have modified slightly: 1. What were varieties of adult in this study? 2. What were varieties of child in this study? 3. How did cultural expectations about these categories shape your relationships?

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Reflexive Course Experiences See Appendix F for details on course experiences. The following course experiences will work well with this chapter: Word Clouds; Interview a Reasearcher (who works primarily with babies, children, or adolescents); Ripped From the Headlines; Words Matter; Debate or Flip-Flop Debate; Speed Discussion; Doodle IT; and Personal Childhood History.

Resources Ethical Resources Involving Children http://childethics.com The Research Ethics Guide Book http://www.ethicsguidebook.ac.uk/research-with-children-105 http://www.ethicsguidebook.ac.uk/Research-with-children-299 National Association of Young Children Code of Ethics https://www.naeyc.org/resources/research/ethical Society for Research in Child Development http://srcd.org/about-us/ethical-standards-research Social Science Research Space http://www.socialsciencespace.com/2010/12/ethics-of-research-with-youngchildren/ United Nations Human Rights Convention on the Child http://www.ohchr.org/en/professionalinterest/pages/crc.aspx

6 ETHICAL RESEARCH WITH PEOPLE WHO IMMIGRATE A Stranger in a Strange Land1 Maria K. E. Lahman, Heng-Yu Ku, and Tekleab E. Hailu When a stranger sojourns with you in your land, you shall not do him wrong. You shall treat the stranger who sojourns with you as the native among you, and you shall love him as yourself, for you were strangers. . . .2 —The Torah, Leviticus 19:33–34

A

lien, emigre, exile, evacuee, FOB (fresh off the boat), foreigner, immigrant, JOJ (just off jet), migrant, nonnational, outsider, refugee, sojourner, stranger, and/or day-crosser, economic refugee, illegal, illegal alien, illegal immigrant, irregular, nonstatus, transmigrants, unauthorized, undocumented.  Some excerpts from this chapter regarding the Horn of Africa are from the following publications: Hailu, T. E. (2012). Adaptation and academic adjustment of first generation immigrant students from the Horn of Africa to higher education learning in the United States. University of Northern Colorado; Hailu T. E., Mendoza B. M., Lahman M. K. E., & Richard, V. M. (2012). Lived experiences of diversity visa lottery immigrants in the United States. The Qualitative Report, 17, 117; and Hailu, T. E., & Ku, H. Y. (2014). The adaptation of the Horn of Africa immigrant students in higher education. The Qualitative Report, 19(28), 1. Some excerpts regarding international doctoral students come from Ku, H. Y., Lahman, M. K., Yeh, H. T., & Cheng, Y. C. (2008). Into the academy: Preparing and mentoring international doctoral students. Educational Technology Research and Development, 56(3), 365–377. 2 In this chapter, some of the quotes we feature highlight the point that people who refer to religious texts in politics do not always follow the same texts’ clear and repeated directives regarding immigrants. Our point is to underscore incongruity. 1

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One experience common to all immigrants is the transition from a country of origin to a new country. This transitory aspect of immigration alone calls for increased awareness and understanding on the part of researchers, due to possible physical and psychological issues related to moving between countries (e.g., Hanna & Ortega, 2016; Hovey, 2000). We believe that the labels and disparaging phrases listed at the opening of this chapter, some of which are fiercely debated in the public sphere, harshly underscore the difficulties of this transition. See Box 6.2 for a discussion of labels for humans. Therefore, the purpose of this chapter is to highlight potential ethically charged contexts and forward areas of ethical consideration and cultural responsivity for immigration researchers. In this chapter, we explore research ethics as related to immigration through the lens of research we have been involved in. While we focus on the United States (the research we consider was conducted there), we believe this chapter has wide applicability for all researchers of immigration, and for social scientists more generally. First, it is notable that while social science researchers may not consider a sample to be composed of immigrants specifically, it is doubtful that participants from countries such as the United States or the United Kingdom will not include immigrants, for example, a study of any of the following: professors, children, nurses, teachers, or mothers. Second, while immigration, on its surface, may appear to be framed within the laws and public attitudes of the nations between which it occurs, immigration is a vital issue for every person globally. Thus, due to the increasingly globalized nature of our world, this chapter may be considered pertinent to all. Issues related to immigration overlap with all of the other exemplar chapters in this book (e.g., children, LGBTQ+, homelessness, virtual/visual research). We believe readers will be able to draw upon these contexts as they consider their ethical stance and how to attempt to always be Becoming. To this end, we present a brief account of humans as a migratory species, provide a discussion of contemporary immigration, discuss our own immigration stories and research, emphasize the importance of terminology, present textboxes of actual research ethical dilemmas and ethical stances (see Box 6.1) and forward sites of ethical tension for Culturally Responsive Relational Reflexive Researchers (CRRRE) to consider, including concepts such as reflexivity, culturally sensitive and culturally contextualized ethics, and access. When a country or a region within a country cannot meet the economic needs of its people, particularly in terms of employment and income, people may immigrate in search of sustainability. If better opportunities for employment and income are available in other countries or regions, then these opportunities attract people hoping to increase their own potential financial and emotional security (Bookman, 2002). In addition to the need for a better life, circumstances that force people to immigrate include wars or political, religious, ethnic, and gender-based persecution. Natural calamities such as droughts, floods, and famines are further causes for immigration. All of these situations can produce local, regional, or international migration. Additional factors include the globalization of world markets, the ease of movement facilitated by modern transportation and

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communication, and the possession of globally applicable skills and talents that allow individuals to work gainfully outside of their own countries (Fussell, 2010; Maharaji, 2010; Nguyen, Hernández, Saetermoe, & Suárez-Orozco, 2013). Some researchers have reported difficulties that may accompany immigration. Murphy (2006) noted: “[S]ettling into a new country can place an immigrant at increased anxiety due to constant pressures and worries about being able to ‘make it,’ depression around unrealized expectations, and decreased satisfaction with life” (p. 81). Immigrants describe separation from family, language difficulties, and discrimination as sources of psychological stress, in addition to the stresses incurred through the act of physically changing one’s residence (Hovey, 2000, in Hanna & Ortega, 2016).

HUMANS: A MIGRATORY SPECIES “Remember, remember always, that all of us, and you and I especially, are descended from immigrants.” —Franklin D. Roosevelt Migration, be it intentional or forced, adds an element of stress to the lives of research participants that calls for an increased vigilance on the part of the researcher. It is notable that humans have been primarily migratory for the majority of their history (Parker, 2016). Writing for the Markkula Center for Applied Ethics, Parker (2016) has said, Migration is fundamentally the story of the human race from its origins to the present. Migration is an integral aspect of life on this planet. People move to survive. They move in search of food. They move away from danger and death. They move towards opportunities for life. Migration is tied to the human spirit, which seeks adventure, pursues dreams, and finds reasons to hope even in the most adverse circumstances. Such movement affects the communities migrants leave and the communities that receive these migrants. This movement also impacts communities along the route of transit. In more recent years, as humans began to establish settled patterns, migration has been alternately looked down upon or romanticized. Explorers (“Go West, young man!”), “gypsies,” pioneers, nomads, Travellers, snowbirds, and migrant workers are just a few examples of migratory groups, each of which has, historically, been viewed differently. Countries involved in migration are termed sending countries and receiving countries. It is easy to see that the biases we hold may be quite different, depending on our particular national context. For example, a receiving country may be

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vilified or lauded for the number of refugees it commits to support, while a sending country may see the receiving country as a safe haven, land of opportunity, land of milk and honey, port in a storm, or causing “brain drain,” taking vital human resources from developing countries (Rotimi, 2005).

CURRENT IMMIGRATION CONTEXTS “I will build a great wall — and nobody builds walls better than me, believe me — and I’ll build them very inexpensively. I will build a great, great wall on our southern border, and I will make Mexico pay for that wall. Mark my words.” —Donald Trump (2015) Currently, the United Nations reports that “International migration is a global phenomenon that is growing in scope, complexity, and impact. Migration is both a cause and effect of broader development processes and an intrinsic feature of our ever globalizing world” (“International Migration,” n.d.). The United Nations believes migration can be a positive force for development when supported by the right set of policies. The rise in global mobility, . . . growing complexity of migratory patterns and its impact . . . all contributed to international migration becoming a priority for the international community. (“International Migration,” n.d.) The United States, for example, has been characterized as experiencing the largest wave of immigration in its history, beginning in the 1970s (Birman, 2006). While recent reports indicate immigration has begun to level off, the United States still receives the most immigrants in the world (Pew Report, 2015). “New immigrants, their children and their grandchildren accounted for 55% of U.S. population growth” (Pew Report, 2015). This wave of immigration is characterized by racial and ethnic diversity, with people representing countries of origin such as Vietnam, Cambodia, Laos, China, Mexico, and India. When considering the demographics of immigrants in the United States today, not only must adults be considered but also their children (Passel & Cohn, 2017). “In 2013, 17.4 million children under age 18 lived at home with at least one immigrant parent. They accounted for 25 percent of the 69.9 million children under age 18 in the United States” (Zong & Batalova, 2015). The United Kingdom has experienced similar unprecedented rates of immigration. In 2014, 13.1% of the UK population was composed of immigrants (an increase of 7% in 1993), and immigrants made up 8.5% of the citizen population (an increase of 4% in 1993) (“Migrants in the UK,” 2017).

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A particularly compelling example of refugee immigration can be found in the ongoing Syrian crisis, which began in 2011 with more than 6.5 million displaced within Syria and an additional 4.5 million people fleeing Syria, most of which are women and children. Neighboring countries have struggled to cope with the entrance of refugees into their countries, and approximately 10% of the people have made their way to Europe where division has occurred among countries over who should shoulder this burden (BBC, 2016). On the shores of Greece, immigrants have been arriving in droves. The dangers these refugees face are innumerable, including unscrupulous human smugglers, tiny unseaworthy boats overpacked with humans, freezing conditions, and a “welcome” upon reaching Greece deemed inhumane due to a lack of facilities (Pursey, 2015). The majority attempting the crossing are in need of protection due to fleeing war in their home country (Breen & Dobbs, 2015). Sadly, as these complex immigration patterns are occurring, the United States and some other wealthy immigrant-receiving countries seem to be at the height of hostility toward those we have always claimed to extended a hand to: the religiously diverse, those willing to work difficult jobs that are hard to fill with citizens (people who will “pull themselves up by their boot straps”), and refugees. These are only a few of the many contexts surrounding immigration in our culturally complex world. Next, we will examine what is meant by the use of the terms immigration and immigrant.

IMMIGRANTS “Your duty is to treat everybody with love as a manifestation of the Lord.” —Swami Sivananda Immigrants come in many forms. One way to better understand people who immigrate is to reflect on why they did it: voluntarily, under compulsion, seeking amnesty, as refugees, etc. Immigrants may also be categorized by the “status” a government affords them. For instance, the categories of immigrants authorized to live and work in the United States are legal immigrant, legal resident, permanent resident, or green-card holder (Hanna & Ortega, 2016, citing U.S. Citizenship and Immigration Services, 2011). One may also consider immigration according to legality of status. Ogletree (2000) identifies four major methods of immigrating to the United States legally: (a) through family sponsorship, (b) through employment, (c) as a refugee, and (d) via the diversity visa. There are two methods of family-sponsored immigration. First, when parents are living in the United States legally, they can invite their unmarried offspring to join them. Second, a daughter or a son living in the United States legally can invite their parents to immigrate. For employment-based immigration, one secures a job in the United States and then immigrates individually or

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with one’s family. In the case of refugee immigration, people leave their countries of origin due to some hardship. Some of these immigrants seek asylum after legally entering the country for a limited time. Others enter the country by crossing the border clandestinely and then ask for asylum. Additionally, people can immigrate through the Diversity Visa (DV) Lottery program. Through this program, immigrants enter the United States after winning a lottery position, (Olgletree, 2000). Generally, the value of receiving countries currency is higher than that of the home nation, offering voluntary immigrants the advantage of having more cash than their co-nationals. Immigrants may also help their families remain in their countries of origin, building better homes for their relatives and helping with educational expenses. This visible material wealth entices local people in the homeland to immigrate. As Maharaji (2010) indicated, such a situation widens socio-economic inequalities among people, leading to instabilities and an eagerness to immigrate.

BOX 6.1. EXAMPLE OF AN ETHICAL FRAMEWORK FOR RESEARCH WITH IMMIGRANTS According to Nguyen, Hernández, Saetermoe, and Suárez-Orozco (2013), there are five areas of potential ethical issues, which researchers working with people who have immigrated are ethically obligated to attend. • Heterogeneity and history of immigrant populations: Researchers need to work toward treating immigrants as a highly diverse population, not one group, the members of which have different countries of origin and receiving countries, reasons for immigrating, etc. • The researcher’s perspectives on immigration • Practical research issues in relation to conducting research (e.g., consent, research ethics board approval) • An awareness of and sensitivity to immigrants who are undocumented • A consideration of how to best frame research findings for policy impact This list was developed from an article by Nguyen et al. (2013) where they define the areas of major ethical issues immigration researchers need to consider. These ideas presented here are the work of those authors, which we have merely condensed. We offer this summary to enable readers to quickly review this ethical position, so that it might potentially serve to guide their own research and creation of an ethics research stance.

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AUTHORS AS IMMIGRANTS “Dat’s what they say of this cauntry back home, Kath: ‘America, the land of milk and honey.’ Bot they never tell you the milk’s gone sour and the honey’s stolen.” —Andre Dubus III, House of Sand and Fog In this section, we highlight our individual immigration stories, some of which are centuries old and others quite recent. We do this not only to be sure readers are aware of the contexts and biases we bring to this discussion, but also to illustrate the way readers will want to actively consider how the story of their immigration, forced immigration, or nonimmigrant identity impacts the immigration research they conduct.

Maria’s Story I am Mennonite, a religious minority, with roots in the German part of Switzerland. My ancestors immigrated to the United States due to religious persecution in the wake of the Reformation. The persecution was severe, with Mennonites being tortured and ultimately killed. My heritage is depicted graphically in the Martyr’s Mirror, a book some Mennonite families owned when I was growing up. The story of how my ancestors decided to come to the United States to make a new start was an integral part of my heritage. While my family personally does not wear religious garb any longer, it was common, when I was growing up, for the women to wear a small hair covering made of fine white net. My parents both wore religious garb until they were a young married couple. My extended paternal family still wears religious garb as do conservative groups of Mennonites. I often consider the meaning behind my immigrant heritage as I encounter other immigrants’ stories, many of whom immigrate under equally trying circumstances. Some include groups who wear distinctive religious garb (e.g., Muslims from the Horn of Africa, for instance, Somalia and Eritrea).

Heng-Yu’s Story I am originally from Taiwan and eventually became a U.S. citizen through employment in the United States. I came to the United States with a student visa to pursue my higher education. As an international student who lacked English proficiency and who had not passed the minimum Test of English as a Foreign Language (TOEFL) requirements to study in a U.S. college, my only option was to enroll in an intensive English program to maintain my student status, improve my English proficiency, and learn more about U.S. culture. After I passed the TOEFL, I was accepted into an undergraduate program at Arizona State University. It took me 10 years to complete my bachelor’s, master’s, and

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doctoral degrees in the United States. During the final semester of my doctoral degree, I applied for several academic positions in the United States, and l was fortunate enough to obtain a tenure-track faculty position. After I obtained the faculty position, it took an additional 8 years to become a U.S. citizen. Therefore, I developed a deep understanding of how time-consuming and financially straining it can be to study in a foreign country, find a specialized job, apply for a work permit and obtain a green card through employment, prepare for the naturalization test and interview, and successfully become a U.S. citizen.

Tekleab’s Story As a U.S. Diversity Lottery recipient from Eritrea, I know how difficult and expensive the immigration process is. In the initial stages, accessing consular offices requires time, and the application requires money. However, I won the visa lottery while I was studying in England. Fortunately, from England, completing the process was not as difficult. Then, I moved with my family to the United States, as the opportunities in the United States were said to be better than those available elsewhere. Unlike many DV Lottery immigrants, my decision to immigrate to the United States was based on my personal experience living in the United States and Europe as a student. Thus, prior to my immigration, I was aware that there are no shortcuts to a luxurious and easy life in the United States, but that with hard work and good information one can achieve his or her dreams. Being aware of the new environment and having the right information helped me know what to expect and how to address the issues I encountered.

THE RESEARCH CONTEXTS WE REFLECT WITHIN “When the stranger in our midst appeals to us, we must not repeat the sins and the errors of the past. We must resolve now to live as nobly and as justly as possible, as we educate new generations not to turn their back on our neighbours and everything around us.” —Pope Francis In this section, I briefly describe the research contexts we, the authors, have been involved in that precipitated our ethical reflections. Heng-Yu and I conducted research about the graduate school experience with international graduate students temporarily residing in the United States, but intending to return to their countries of origin. This work consisted of in-depth narrative interviews and surveys with the students over the course of a yearlong experience with a professional institute we implemented for mentoring international graduate students into the academy (Ku, Lahman, Yeh, &, Cheng, 2008). Tekleab, with the support of his

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coauthors and others, has extensively researched the experiences of immigrants from the Horn of Africa through survey, ethnography, and interviews (Hailu, 2012; Hailu & Ku, 2014; Hailu, Mendoa, Lahman, & Richard, 2012). He was able to access these participants through a refugee center and referential sampling. With a co-researcher, I also conducted in-depth research with sojourners from China and South Korea regarding their parenting practices and their children’s preschool experiences in the United States (Lahman & Park, 2004). I have consulted on or overseen multiple significant research projects involving Latino immigrants (e.g., Lahman, Mendoza, Rodriguez, & Schwartz, 2011). These varied (yet related) experiences, in addition to our own experiences as immigrants, are the contexts upon which we draw as we consider ethical research involving people who immigrate.

BOX 6.2. WORDS MATTER: DEFINITIONS AND TERMS “Nihil humanum a me alienum puto, said the Roman poet Terence: ‘Nothing human is alien to me.’ The slogan of the old Immigration and Naturalization Service could have been the reverse: To us, no aliens are human.” —Christopher Hitchens In political contexts of major immigrant receiving countries such as those of the United States, Canada, Britain, and some European countries, multiple terms with varying meanings are used to refer to immigrants. Frequently, these terms are employed to convey a story that immigration is something current citizens should fear. In a country such as the United States, which is built on a proud history of immigration, the narrative of fear is deeply concerning. It is typical for presidential candidates to boast of their own immigration credentials, to demonstrate the much-lauded belief that the United States is a land where one can pull oneself up by the boot straps. However, it often appears that these narratives must be what is contemporarily seen as a “White” man’s immigration heritage. We emphasize “contemporary” because groups now deemed mainstream white groups, such as Irish and Italian Americans, had no welcoming hand to ease their initial immigration to the United States. The use of language reflected in this chapter’s opening convinced us in a section of this chapter we needed to address terminology. Even as we write, the meanings of the terms will shift and evolve, so readers should consider the ever-changing nature of language when reviewing the definitions. “Words matter, particularly in the context of an issue as contentious as immigration.” —Joquain Castro (Continued)

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(Continued) • Emigrants: defined in relation to a certain country are people who have left that country (English Language Usage, n.d.). • Immigrants: people who have entered a country with the intent to stay there. This term applies even after the person has gained citizenship through naturalization (Hanna & Ortega, 2016). • Migrants: people who move their residences. This move may be within a country or between countries. Migrants may also follow a recurring pattern of movement, as in the cases of seasonal farm workers or U.S. senior citizens termed “snowbirds,” who temporarily move south for warmer climates in the winter. • Nonstatus migrants: people who lack the legal status that would allow them to live in the country in which they reside (Khandor, McDonald, Nyers, & Wright, 2004 in Bauder, 2013). • Refugees: people fleeing natural disaster, armed conflict, or persecution (UNHRC, 2016). • Sojourners: people who have entered a country with the intent of returning to their home country (Ku, Lahman, Yeh, &, Cheng, 2008). • Transmigrants: people who move back and forth between their country of origin and a host county. This may follow a pattern, as in the cases of people who move in pursuit of seasonal work. Transmigrants may be documented or undocumented (Negi, & Furman, 2009). • Undocumented people: people who lack the legal documents required to remain in the country in which they are located.

We now highlight several areas of immigration we have been involved in as researchers to provide context for readers as to how broad and complex the area of immigration research is. These areas are as follows: people who are undocumented residentially, U.S. diversity visa lottery immigrants, and sojourners who are international graduate students.

PEOPLE WHO ARE UNDOCUMENTED “Under all other laws it is the act that is illegal, but under immigration law it is the person who is illegal. Those subject to immigration control are dehumanized, are reduced to non-persons, are nobodies. They are the modern outlaw. Like their medieval counterpart they exist outside of the law and outside of the law’s protection.” —“No One Is Illegal” (n.d.)

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We opened this chapter with a list of terms, intended to grab attention and provoke contemplation. In the United States, a dominant term currently employed by academics, researchers studying people who lack legal residential paperwork, and advocates is undocumented (Lahman, Mendoza, Rodriguez, & Schwartz, 2011). In Europe, it is common to use the descriptor irregular people (Bauder, 2013), terms intended to express support and to move away from perpetuating phrases that are used as slurs. In the United States, the term alien has long been used by the government (since late 1700s) to describe people who are not documented residents. Coupled with the term illegal, as in illegal alien, and in a modern context, the word evokes an extraordinary “sci-fi” connotation. In 2015, a bill was submitted to the U.S. House of Representative by Rep. Joaquín Castro (D-Texas) titled Correcting Hurtful and Alienating Names in Government Expression (CHANGE) Act which, if passed, would rid the federal government of this terminology. There is a precedent for similar updating of language seen in the removal of lunatic and mentally retarded from federal legislation (http://thehill.com/regulation/legislation/257801-house-bill-wouldchange-term-for-immigrants-in-federal-law). The bill has been under review with the Subcommittee on Immigration and Border Security since November 2015 and at the time of this writing is still under review. This type of attention to changing hurtful terminology in a country based on immigration may be seen in other examples such as The U.S. Library of Congress responding to petitions from Dartmouth students and librarians to change the term illegal aliens to noncitizens or unauthorized immigrants (Qin, 2016). See the following link to track this bill: https://www.congress .gov/bill/114th-congress/house-bill/3785/all-actions. We resolutely join the chorus of voices asserting that people are not illegal; an action may be illegal, but not a person. It is within this context that we present ethical considerations regarding people who are immigrants, economic refugees, or do not have residential documents. Terminology becomes particularly loaded when discussing immigrants who do not have “legal” status. Labels focus on absence or lack: lack of documents (“undocumented”), lack of established travel arrangements (“irregular migrant”), lack of visibility (“clandestine status”), lack of social status (“shadow population”), lack of security (“precarious status”), lack of humanity (“alien”). (Nyers, 2010, p. 132) Furthermore, these terms describe the outcome of the process of illegalization and thereby conceal the process itself (Bauder, 2013, p. 3). Bauder (2013) offers an insightful overview of the myriad of labels used, underscoring the changeability of status faced by undocumented persons, who might be documented and then undocumented for many reasons. Some of the terms referring to this situation include uncertain status, precarious status, gradations of status, and nonstatus. Maria: A student bubbling over with a project idea for a research course I am teaching stops me, in the hall. I am nodding my head, intent on listening as his

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words spill around me in the busy corridor. I hear him say: case study, males, workers, undocumented. Then, I begin to worry about consent, the IRB, vulnerability, a novice researcher, confidentiality, and illegality of status. As an IRB chair and member in long standing, I know that I can work through these issues, increasing the safety and potential benefit for all parties, but I realize that I need to begin conducting in-depth research regarding which processes will be best to recommend. Thus, my journey into this topic begins. Citing Neyers, Bauder (2013) underscores the use of language to manipulate the listener and create fear of undocumented persons. Critics who are opposed to this type of migration typically employ a pejorative discourse to define nonstatus people in terms of criminality (“illegals”), poor moral character (“queue jumpers”), or as a dangerous threat (“terrorists”) . . . lack of visibility (“clandestine workers”), lack of social status (“shadow population”), lack of security (“precarious status”), lack of humanity (“alien”). (p. 3) Neyers (2010) illustrated how the theme of fear is a reality for people who are the ones who are undocumented, noting that one such person described the experience as similar to being a “ghost.” Without documents, people live in a state of fear that citizens with documents cannot easily fathom. A simple traffic violation, such as jaywalking, could end in deportation. Neyers conveyed the observations of activists, who reported cases in which women are detained for not being documented after calling emergency services seeking help in escaping domestic abuse or for trying to access social services. We have also personally encountered research situations, which were not about immigration, where participants shared they did not have residential documents. The guidance of the research ethics board was needed to advise researchers on how to de-identify highly sensitive data and destroy signed consent forms. Researchers have resorted to storing their data in other countries when actively researching people who are undocumented (Nguyen et  al., 2013). Similarly, researchers have reported not being allowed to use U.S. servers to store sensitive data due to the potential that U.S. government agencies might use the Internet in in highly invasive ways (see Appendix E). The theme of fear recurs repeatedly for those who are undocumented.

DIVERSITY IMMIGRANT VISA LOTTERY “For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me.” —Matthew 25:35, ESV The Department of Homeland Security explained the Diversity Visa (DV) program as follows:

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The Diversity Immigrant Visa Program (DV Program) makes up to 50,000 immigrant visas available annually, drawn from random selection among all entries to individuals who are from countries with low rates of immigration to the United States. The DV Program is administered by the U.S. Department of State (DoHS, 2014). The amount of diversity visas issued seem to have been about the same for over two decades. See the following document for current details: https://travel.state .gov/content/dam/visas/Diversity-Visa/DV-Instructions-Translations/DV-2018Instructions-Translations/DV-2018%20Instructions%20English.pdf. Winning this lottery does not bring any money to the recipient; rather, the visa winner’s prize is a means to enter the United States legally. Those entering this lottery must fulfill the requirement of having completed high school or possessing work experience requiring at least 2 years’ training (U.S. Department of State, 1997). Money becomes a potential barrier when applying for the DV Lottery because the only way to apply is via the Internet, which often requires money to access. After winning the DV Lottery, the recipient also needs money for transportation and visa processing. As a result, the number of citizens having access to essential information, the educational skills to complete the application, the financial resources to access the Internet, and the time to do so is limited (Rotimi, 2005). There are differing views about the DV Lottery as immigration policy and about its effects on immigrants’ nations of origin. For example, Rotimi (2005), writing about immigration through the DV Lottery and its effects throughout the continent of Africa, argues that “the new threat to Africa lies in the increasingly diverse mass evacuation schemes for highly trained and skilled Africans” (p. 10). Rotimi frames his argument in terms of a “brain drain” of Africa. See Box 6.3 for an example of a dilemma from Tekleab’s research with Horn of Africans.

BOX 6.3. RESEARCH ETHICS VIGNETTE: TEKLEAB’S EXPERIENCE WITH THE DV LOTTERY Tekleab E. Hailu As a DV Lottery recipient from Eritrea (located on the Horn of Africa), I knew how difficult and expensive the immigration process would be. When I enrolled in a doctoral program, I decided to conduct research with immigrants from the Horn of Africa, with the aim of positively impacting their condition. However, even this level of insider perspective was not without challenges. A key gatekeeper for the refugee center at which I wanted to conduct an ethnography (who was also from the Horn of Africa) suspected that I might be a spy for CIA. This is not as far-fetched as it may seem, as areas in the Horn of Africa have sheltered groups at odds with the United States in the past. Additionally, it is said in the Horn of Africa community that the CIA recruits insiders to help counter these groups. How was I to proceed?

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INTERNATIONAL STUDENTS: SOJOURNER IMMIGRANTS “The land flourished because it was fed from so many sources—because it was nourished by so many cultures and traditions and peoples.” —Lyndon B. Johnson Many immigrants aspire to return to their countries as soon as their situation allows (Arthur, 2008; Getahun, 2007). These immigrants are termed sojourners, to underscore the temporary nature of their stay. Certain international graduate students may be considered sojourners, intending to go back to their countries of origin. In our experience, international graduate students who are sojourners wish to return to be with extended family and to directly impact their country with their increased education. Additionally, many are awarded scholarships by the governments of their home countries that provide full-time employment, which may also be a condition of the scholarship, upon completion of the degree. Students transitioning into graduate school have been shown to experience increased feelings of insecurity, decreased self-esteem, and high levels of stress and anxiety (Grant-Vallone & Ensher 2000). While the graduate experience can be stressful, even bewildering, for any student, it can be particularly so for international students (Watkins, 1998). International students are unique because many speak languages and come from educational systems that are different from those of the West. Most international students are accustomed to different teaching styles and cultural norms from those familiar to their Western peers. Some of the biggest challenges for international students include difficulties with the English language, separation from family, social and cultural adjustment, and academic role conflict (Ryan, Markowski, Ura, & Liu-Chiang, 1998; Zhai, 2002). The benefits of recruiting and retaining high-caliber international students for postsecondary institutions are numerous. First, international students with positive experiences may be effective ambassadors, conveying favorable attitudes upon return to their countries (Ebersole, 1999). Second, the development of long-term connections between institutions and alumni can facilitate research collaborations and relationships with overseas organizations (Trice, 2001). Third, international students who stay in the degree granting country to work in faculty positions bring much-needed international perspectives to academic culture, which may foster the abilities of domestic graduates to operate more successfully in an increasingly globalized community (Association of American Universities, 1998; Trice, 2001). Fourth, international students are a rich source of revenue for universities that are increasingly beleaguered in a competitive market.

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BOX 6.4.  RESEARCH ETHICS VIGNETTE Maria and Heng-Yu When we were conducting research with sojourner doctoral students, there was one student who was the only person from their country on campus. This presented an ethical dilemma in the area of confidentiality. The students were asked interview questions that inquired about how effective they felt their PhD program, faculty, and research advisor to be. The student, frankly, did not seem concerned, but as professors, we were highly aware of how important the relationship between student and faculty is and how sensitive some faculty are to feedback. Eventually, we devised two strategies. First, we described this student’s origin at the continent level, such as European, African, or Asian, and we explained in the article why we did this, as other origins were identified at the national level. Second, some of the data we presented in collective voice research poetry. See an excerpt here (from Lahman et al., 2011):

The Monster in the Closet: International Students’ Graduate School Experiences Graduate school is swimming. We have to put our heads in the water and swim hard towards the end of the pool. We work so hard that sometimes we almost can’t breathe . . . Education changes the life of a single person, the life of a family, the life of the country . . . The monster in the closet or the monster under the bed seems scary until you actually open the closet to see, there is no monster? There’s no end for learning . . . Graduate school is like (Continued)

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(Continued) a piece of dark chocolate. There are sweet days and bitter days . . . Don’t let the bastards grind you down. These were still only partial solutions, as the misattribution of data remains a concern. For instance, if we said “European,” it would be possible to attribute the data to a student at the university who was from Europe, but wasn’t even part of the study. Further, anyone who was aware of the extensive in-person group sessions that occurred during data collection could also surmise the student’s identity. It is rare to feel that ethical dilemmas in research are wholly resolved, but with consideration, risk may be reduced.

ETHICAL CONSIDERATIONS WHEN CONDUCTING RESEARCH WITH IMMIGRANTS “Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares.” —Hebrews 13:2, ESV Research is a moral and political endeavor. Historically, scientists have believed that research is objective, or they have tried to control subjectivities. Currently, more researchers are gaining a nuanced understanding of the role that their personal ethics play within research and the political and cultural contexts in which they are embedded. As Birman (2006) notes, “research on immigrants and refugees is not morally neutral. Immigration issues are hotly debated in our society” (p. 155). As research with people who have immigrated has steadily increased (APA, 2012 in Nguyen et al., 2013), there has begun to be methodological and/ or ethical literature to guide researchers in Becoming (e.g., Birman, 2006; Nguyen et al., 2013; Temple, & Moran, 2011 Van Liempt, & Bilger, 2009. Immigrants have been described as “a population that has multifaceted vulnerabilities: documentation status, economic vulnerability, mental health challenges related to the process of migration or flight from home countries, as well as the sheer youthfulness of the population” (Nguyen et al., 2013, p. 3). While we wholeheartedly agree, we would remind readers that in addition to being

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vulnerable, immigrants are amazingly resilient and determined. Therefore, as we have seen throughout this textbook, similarly to other potentially vulnerable groups, immigrants are most accurately described as capable and competent, yet vulnerable. Immigrants face many difficulties; “[h]owever, beyond the difficulties and uncertainties the migrants face, they have internal zeal and aspirations for a better life” (Hailu & Ku, 2014, p. 3). The increase in immigration research, coupled with the complex and culturally diverse nature of the participant groups, requires that there also be a continued corresponding increase in methodological and ethical literature. We challenge researchers to take detailed notes of the processes, problems, and successes in their research with immigrants, while also asking the participants themselves what worked well in the research process. Further, we urge researchers to publish these findings alongside their research findings. Nguyen et al. (2013) has emphasized, an urgent need for practical, methodological, theoretical, and interpretive standards upon which researchers, institutions (including review boards), and policy-makers can draw when conducting research on immigrantorigin families. (p. 3) We resoundingly agree. Therefore, to contribute to this body of literature, we consider possible ethical issues that may arise when one studies immigrants, including reflexivity, culturally sensitive and culturally contextualized ethics, and access.

Reflexivity If a researcher initiates research or joins a research team studying immigration, one might assume that the researcher has a sophisticated understanding of immigration issues, but we have found this not always to be the case. The following are only a few examples of what we have encountered. We have worked with researchers of recently immigrated Muslim people from the Horn of Africa; these researchers were not aware of gender interaction restrictions that frequently exists, such as some groups having the cultural expectation that men and women who are not immediate family should not touch. We have spoken at length with researchers who have conducted in-depth interviews with participants from the Horn of Africa, yet did not view gender as having impacted the interviews. Another researcher studying immigration had not considered that there were U.S. immigration issues outside of those occurring at the Mexico/U.S. border. When I, Maria, first started writing about undocumented people, I held a strong position of support for these participants, but challenged myself to read extensively, reviewing the arguments made on all sides of the issue. In this quest for a deeper, more nuanced, reflexive understanding, I came to realize that if a handful of undocumented immigrants walked across my yard every day, regardless

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of whether I understood the Mexico/U.S. border war history, I would still feel dissatisfied, tense, and perhaps frightened by this intrusion. While by no means changing my stance as an advocate for immigrants, I do have a more nuanced perspective as to the complexities of this issue. The actual U.S. border is far away from the ivory tower where I do much of my writing. We share these examples to demonstrate that it is incumbent upon researchers to “read up” on cultural information related to their research interests, but even more so to speak in-depth to constituents from the groups you are interested in studying. Consider collaborating with insiders so understanding of these complex cultural interactions can be deepened. This is where the reflexive part of culturally responsive research comes into play. As researchers embark on immigration research, we must challenge ourselves to engage with views on all sides, attend to relevant religious issues and cultural customs, and ask ourselves and our elder extended family members probing questions about our immigration history. We should attempt to put ourselves in positions to experience immigration issues first hand by volunteering at schools, local immigration centers, hospitals, and social work centers impacted by immigration. In a review of the research with adult refugees in emergencies (e.g., refugees of climate or conflict), Chiumento, Rahman, Frith, Snider, and Tol (2017) noted researchers agreed reflexivity was vital to conducting ethical research. Critical ethical reflection supports reflexivity towards researcher power and is suggested as a way to promote ethics as a natural discourse in emergency research. Given the particular ethical challenges that may arise in emergency research, authors recommend conducting ethical reflection to increase transparency and learning. This reflexivity needs to occur at all stages of the research that reframes the researcher’s position “from that of ‘expert’ to ‘co-learner’” (Chiumento et al., 2017) As research on immigrant families falls prey to scientific trendiness, there is a need to cast a critical and socially responsive eye upon the research and examine one’s own role in accurately representing the experiences of immigrant populations that are often marginalized both societally and in research (Nguyen et al.,2013, p. 4).

Culturally Sensitive (Responsive) and Culturally Contextualized Research Ethics It has been suggested by many that there can be no universal research ethic (Angell, 1988, Grady, 2015) defined at the micro level (Liamputtong, 2008). Researchers of complex, locally contextualized situations have promoted a view of research ethics as being indigenous, local, flexible, and fluid (Grady, 2015; Liamputtong, 2008). We would add organic to that list as well.

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This may seem, upon the first reading, to completely undermine a researcher’s need to adhere to their nation’s research ethics code and discipline standards, so what may be needed is a set of general flexible ethical characteristics for researchers to follow. Scholars should aim to embody these characteristics, which will facilitate the fulfillment of ethical research obligations. For instance, if a researcher is working within a culture in which the father or husband are who consents for a woman to participate in a study, there is no reason why the researcher cannot gain the male consent and additionally, directly ask the woman for consent. Alternately, the researcher may choose not to take advantage of data or of a research situation if, through the research process, they realize that the woman does not wish to be part of the study (for an in-depth discussion of consent and cultural responsivity, see Chapter 4). As we have seen, immigration research, by its very nature, is culturally complex and characterized by the overlap of multiple cultures. This cultural complexity, while fascinating and invigorating due to potential knowledge to be gained, means that research ethics may become difficult to negotiate. This is especially true if one is unable to step away from deeply ingrained and revered Western ideals regarding areas such as individual autonomy and research board procedures. “As a result [of cultural complexity] researchers confront ethical dilemmas that cannot be easily resolved with guidance from existing ethical principles and guidelines” (Birman, 2006, p. 155). Culturally sensitive researchers may need to seek a balance between how participants view ethics and the standards of the broader Western research community (Birman, 2006; Liamputtong, 2008). The literature highlights characteristics that cross-cultural researchers need to have or cultivate, including flexibility, keen listening skills, an appreciation for ambiguity, courtesy, patience, adaptability, respect, trustworthiness, humility, and an openness to accepting invitations (e.g., to eat, travel, or attend events) (Liamputtong, 2008). To these characteristics, we add curiosity, responsiveness, and an emphasis on relationships. Note that all of these characteristics would benefit any researcher. Laimputtong (2008), writing about cultural sensitivity, has advocated for cross-cultural researchers to create research designs that are long-term and indepth, arguing that this is the only way to ensure the acquisition of deep knowledge of a dissimilar group. [R]esearchers must have a thorough understanding and knowledge of the culture. . . . This may involve some intensive training on cross-cultural issues, but it is only through immersion in a particular culture that researchers may have an in-depth and accurate understanding of cultural groups. This necessitates a long-term relationship with, or a long stay within, the group. (p. 4)

Access Researchers have reported encountering distrust from potential participants who are immigrants due to experiences with unscrupulous organizations that do

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not abide by the same professional standards as researchers (Birman, 2006). In a helpful discussion Van Liempt and Bilger (2009) point out that not only do some immigrants (they highlight asylum seekers and undocumented workers) mistrust others as a survival strategy, but the immigrants are also used to being mistrusted. How to access potential research participants in appropriate and effective ways is a difficult part of research to negotiate in general and perhaps even more so for immigrants who inherently hold multiple positionalities. Distrust adds a need for even more caution on the part of researchers (see the Chapter 8 on ethics in homelessness research for more on this discussion). In general, it is assumed that sharing some of the characteristics of the group facilitates gaining access, but this is not always the case (see Tekleab’s narrative, in Box 6.3, regarding insider research). While access to immigrant groups is often gained through gatekeepers in social institutions groups such as schools, immigration centers, and places of worship, the researcher may wish to approach immigrants directly in public places where they congregate. Both strategies have pros and cons. Institutional gatekeepers can afford researchers opportunities that the researcher could not create on their own. However, gatekeepers may also obstruct or delay research in a manner that seems needless to the researcher, perhaps due to feeling protective of potential participants, being overworked in other areas of more immediate necessity to the gatekeeper, or being suspicious due to past, poorly conducted research. Suggestions for gaining access to immigrant participants include meeting in a public location, such as a park or a library, with private or semi-private spaces (a park bench or study room, for instance), which allows immigrants who are undocumented or with whom the researcher wishes to discuss sensitive topics to walk away and not be contacted again if they choose (Duvell, Triandafyllidou, & Vollmer, 2010. Immigrant participants may also invite researchers into their homes for research events or even for family meals or activities. This type of research experience affords plentiful, rich information on daily life in an observational, naturalistic context. As with any research in a private space, the researcher is advised to take an associate with them, such as a fellow researcher, friend, interpreter, or family member. If the researcher is specifically studying immigrants who have undocumented status or who are involved in illegal activity, it may however be advisable to meet at the residence of the study participant’s friend, so the researcher will not have specific home locations as part of their data or personal memory (Duvell et al., 2010). If conducting research in a more intimate setting, the participants may begin to consider the researcher as a potential friend or advocate. Researchers ought to consider in advance what type of monetary reciprocity they are willing to participate in and also what level of reciprocity (Duvell et al., 2009). For example, how are potential requests for money or material resources to be handled? While access may be increased by reciprocity it is important to consider at what level it might be coercive due to the participants needs or when and how the researcher

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will say no due to their needs. Some have argued it is unethical not to help participants who are in need (e.g., Lammers, 2007). Lammers (2007) engaged in advocacy work amongst the groups her research participants were from. She also found herself paying for a variety of things for her respondents, from passport size photos to letters of recommendations, appeals, requests and complaints to be typed and posted, to blood tests, hospital bills, monthly rents and even school fees. She was also engaged in hands-on advocacy work. (Lammers in van Liempt & Bilger, 2012) Lammers found that as she engaged in this giving and in advocacy for those she researched, she gained a deeper understanding for what the participants went through on a daily basis. Lamers shared that this “deepened my understanding of the despair, anger, humiliation, and resistance that are born from the interaction between refugees and these bureaucratic organisations. It also taught me how this interaction affects (re)negotiations of identity” (p. 75). If the reciprocity in the form of money or gifts is being used for participant recruitment, it typically needs formal research ethics board approval. However, creative researchers have found other ways to support participants through offering, when asked, information and advice (Duvell et al., 2010) as illustrated here in Lammer’s advocacy work. For instance, researchers might advise participants on social rights, how to proceed with government forms, college applications, etc. Considering the knowledge and networks at your disposal prior to entering a research site (where people are often marginalized) may allow you to alleviate any awkwardness regarding potential material requests and to supply genuinely needed advice. For instance, when conducting research with sojourner parents, I, Maria, am frequently asked for advice on parenting questions, including how to access services such as speech therapy, what childcare resources are available in the community, how parents should discipline a child, and how the use of the English language should be supported in a home where it is not the first language. Access is often provided by someone known to the participants and someone who is also known to the researcher. Researchers are advised to take care in these situations. It is possible to move too quickly and only later realize that the person through whom you are seeking access is a little-regarded member, or worse, a person who can command the participants to take certain actions in a research context, thus limiting autonomy. Birman (2006) reported that during the research process she discovered that the person through whom she had gained access was “allowing” some women into the study and “denying” others. One can see through this discussion access to participants, while always any issue to be considered thoughtfully before a research study is even more so for immigration researchers.

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CONCLUSION We would like to close with a quote from Pipher (2002), which raises the hope that we can see the cultural complexity in immigration research as a challenge, delight, and source of deep knowledge. When Europeans arrived on this continent, they blew it with the Native Americans. They plowed over them, taking as much as they could of their land and valuables, and respecting almost nothing about the native cultures. They lost the wisdom of the indigenous peoples—wisdom about the land and connectedness to the great web of life. . . . We have another chance with all these refugees. People come here penniless but not cultureless. They bring us gifts. We can synthesize the best of our traditions with the best of theirs. We can teach and learn from each other to produce a better America. (p. 349)

Reflexive Questions General Immigration Context The first six questions are from the Markkula Center for Applied Ethics, and they help researchers consider and make transparent our perspectives on migration in general.   1. Is migration inevitable? Why or why not?   2. Is migration necessary for the survival of the human race? Why or why not?   3. Can migration be controlled? Why or why not?   4. Is migration systematic or is it organic? Why or why not?   5. Should migration be controlled? By whom?   6. Would migration respond to planning? Why or why not?   7. Are there times when migration is the product of unpredictable factors?   8. What are pros and cons to an insider or outsider researcher perspective?   9. How might researchers collaborate with refugee groups to conduct empowering research? 10. How might perspectives differ on migration if the country is a sending or receiving country? 11. Does researching immigration ever put the researcher in any jeopardy, and if so, how?

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12. Does researching immigration ever put the research participants in any jeopardy, and if so how?

Personal Immigration Context 13. What do you know about your family’s immigration story? 14. What immigration patterns, forced or chosen, does your family history follow? •• How does the nature of this history impact your research? •• For the many who are mainstream and perhaps distanced from their immigration story what might this tell us about identity? 15. Is your immediate story one of residing in a sending or receiving immigrants’ country? 16. How might your immigration story impact the research you conduct? 17. What are the immigration stories that have impacted your community, historically and contemporarily? 18. What knowledge do you have about the immigrants in your community? 19. In the population you are sampling from, could there be immigrants? If so, what might their immigration stories and histories be? 20. How does the research ethics board at your university support researchers who work with people who are undocumented residentially? 21. What is a researcher’s responsibility when they receive sensitive information that has not been asked for? 22. How does your university support researchers who intentionally or unintentionally research actions that are illegal? 23. What aspects of your research could uncover highly sensitive information such as a participant’s undocumented status? To all these questions, we add two more from van Liempt and Bilger (2012, p. 461): 24. Who am I, the researcher, in the eyes of the participants? 25. What are the expectations from the participants’ side of research?

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Reflexive Course Experience Welcome Stranger: We, the authors, frame the chapter with quotes from major religious, spiritual, antitheist, and political leaders and texts to underscore contexts in which welcoming the stranger is mandated. We clearly see irony in how groups seem to ignore these mandates in a political context. As a class, examine the news for the most current immigration and/or refugee contexts. For example, at the final writing of this chapter we are a few months out from the initial Trump presidential ban of certain Muslim countries. Consider as researchers how might you best go about researching both sides of this issue. What personal biases might you need to engage with? What ethical issues could occur? In small groups, on large paper, draft out a plan that would be respectful of all sides in this debate and brainstorm a list of potential ethical issues. Be sure to include all perspectives. For example, in a border crossing research plan for the United States and Mexico major participants include those crossing the border, people paid to help with the crossing, border police, volunteer border “police,” volunteers that support human needs of those crossing, the people whose land is being crossed, etc. See Appendix E for details on course experiences. The following course experiences will work well with this chapter: Word Clouds; Interview an Immigration Researcher; Ripped from the Headlines; Words Matter; Debate or Flip-Flop Debate; Speed Discussion; Doodle IT; and Personal Immigration History. A possible topic to debate or have a speed discussions about is if researchers should give assistance to participants in the form of monetary support. These experiences provide time for individual and group reflexivity. Immigration is often a hot topic so be sure to provide room for respectful ways to dissent and not to arrive at consensus quickly. For example, if all members seem to agree ask people to consider why someone might disagree with the group and how these perspectives could be researched.

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Resources Books Carens, J. (2013). The ethics of immigration. New York: Oxford University Press. Van Liempt, I. (2009). The ethics of migration research methodology: Dealing with vulnerable immigrants. Eastbourne, Australia: Sussex Academic Press. Temple, B., & Moran, R. (2006). Doing research with refugees: Issues and guidelines. Bristol, UK: Policy Press. Vargas-Silva, C. (Ed.). (2012). Handbook of research methods in migration. Cheltenham, UK: Edward Elgar Publishing.

Internet Markkula Center for Applied Ethics: Focus Area Migration and Immigration https://www.scu.edu/ethics/focus-areas/more/resources/the-ethics-of-migrationand-immigration/

7 ETHICAL RESEARCH WITH PEOPLE OF DIVERSE SEXUAL ORIENTATION Inescapably Othered?1 Eric D. Teman, Maria K. E. Lahman, and Veronica M. Richard Everybody’s journey is individual. If you fall in love with a boy, you fall in love with a boy. The fact that many Americans consider it a disease says more about them than it does about homosexuality. —James Baldwin

E

ric: On an evening in early January during the second semester of an educational ethnography, I received an email from the director of the LGBTQQ+ university cultural center, stating one of the students had passed away. I later learned this individual was one of the participants in the ethnographic research study, and it was apparently a suicide. Besides the devastation the suicide caused, it also presented a set of ethical issues for me as a researcher. Was I to discontinue the study? Was it acceptable to interview other participants regarding their feelings about the suicide? There did not seem to be an obvious answer, so naturally  Sections of this chapter are taken from Teman, E. D., & Lahman, M. K. E. (2012). Broom closet or fish bowl? An ethnographic exploration of a university queer center and oneself. Qualitative Inquiry, 18(4), 341–354. 1

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I decided to seek the advice of my research advisor and of the research ethics board. After some thoughtful interchanges, the co-chair of the research ethics board2 approved interviewing participants on their thoughts about suicide in the LGBTQQ+ community in general as well as the suicide of a friend, conditioned upon a separate consent, form including counselors’ contact information. In the following chapter, we seek to illustrate the manner and contexts in which our ethical research stance developed. This stance may assist researcher in becoming: finding ways to responsively, reflexively, and relationally conduct research with diverse sexual and gender populations. As part of an educational ethnography of a LGBTQ (lesbian, gay, bisexual, transgender, queer) university cultural center, we developed an ethical stance, in relationship to queer constituents, nested in critical theory. The murder of a transgender community member, the suicide of a research study participant who was gay, and the corresponding everyday research occurrences precipitated deep reflection about ethical considerations when studying persons who might be Othered due to sexual orientation or transgender. To begin, we present a brief literature review of research ethics and LGBTQQ+ populations, the historical research narratives of LGBTQQ+ populations, and connect these to the construct of Other explored in this book. To illustrate possible aesthetic forms, we also present some of the literature as a play. We depict the LGBTQQ+ community as possibly an inescapably Othered culture due to subordination within the dominate heteronormative communities. We then describe the study from which this ethical stance emerged. Finally, methodological and ethical considerations in the following areas are advanced: authentic queer narrative, anonymity, and aesthetic research representation.

BACKGROUND We review literature in the area of research ethics, historical research narrative of LGBTQQ+ populations, and we tie these to the construct Other.

Research Ethics United States federal regulations governing human subjects research ethics review boards, established categories of vulnerable people by saying “the IRB . . . should be particularly cognizant of the special problems of research involving vulnerable populations, such as children, prisoners, pregnant women, mentally disabled persons, or economically or educationally disadvantaged persons” (Office of Human Research Protection, 2010). It is notable that a person who identifies as LGBTQQ+ is not in this statement, yet in our experience, research  W hile Maria is an IRB co-chair, she did not make these decisions since she wanted a different chair’s opinion due to her clear bias of wanting the study to continue in a relational and respectful manner. 2

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ethics boards review this group, including publically identified adults, as highly vulnerable. Certainly, LGBTQQ+ groups have vulnerabilities that may be at rates higher than other groups (e.g., suicide risk, depression). Also, throughout history, LGBTQQ+ groups have been targeted with violence, hate, stigma, and isolation for their sexual diversity (e.g., Plant, 2011). We argue while IRB may focus on protecting the vulnerable due to the history of unethical human research (e.g., Hornblum, 1998; Humphreys, 1970; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979; Plant, 2011; Washington, 2006; Weindling, 2004) in contemporary practice IRB reviewers may further marginalize potentially vulnerable LGBTQQ+ participants and deny them the respect, justice, and benefits of research (Bradley, 2007; Fisher & Mutanski, 2014; Irvine, 2012; White, 2007). Irvine (2012) reports that while researchers are accustomed to research ethics boards stringent review of sexuality research with adolescents, there are alarming reports of this level of oversight occurring with adult LGBTQQ+ research participants who are public with their identities. Irvine wrote, “In an alarming twist, however, my respondents [researchers] reported that IRBs routinely blocked research on adult sexual minorities, particularly LGBTQQ+ communities, because of their alleged vulnerability” (p. 32). Examples of IRB road blocks ranged from requiring the word queer be removed from research participant recruitment literature due to possibly being offensive to denying approval of research with LGBTQQ+ groups in the military. Eric has had similar experiences when trying to conduct research with university students who are adults and publicly identified as LGBTQQ+, including the complete rejection of a research proposal. Fisher and Mutanski (2014) have reported serious struggles with research ethics board reviews of youth and sexually diverse research topics: Given the socially sensitive nature of suicide, substance abuse, and HIV and STI [sexually transmitted diseases] research in general and LGBTQ research specifically, in the absence of empirical data to guide their decisions, IRBs must often rely on subjective judgments of minimal risk, which can lead to overestimation of the magnitude and probability of psychological, social, and informational harms that might arise from LGBT youth participation in clinical trials. While most would agree youth are potentially vulnerable in many ways, protective oversight should not stifle research, but engender well thought out ethical research. Professional codes and federal regulations, while necessary, are superficial or minimal in comparison to other ethical dimensions because of the broad coverage of universal research issues; that is, privacy, bodily and psychological harm, informed consent, etc. The superficiality and at times misapplication or over application becomes readily apparent when considering forms of research that are critical, transformative, collaborative, engaged, culturally responsive, relational, and reflexive in nature (Lincoln & Cannella, 2004) and/or with potentially

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vulnerable groups of people. These minimal procedural guidelines must be met in order to be in good standing as a researcher with the research community and to follow the law. However, we must work to inform the groups that review our research so much needed research is not stifled. Writing about sexuality research overall Irvine (2012) said, IRBs that assume sexuality is “sensitive” prohibit the very research that might demonstrate that, for many, it is not. IRBs that presume sexuality is “risky,” prohibit the production of sexual knowledge and silence the voices of diverse sexualities—knowledge which might itself challenge cultural fears about sex. IRB practices that disadvantage sexuality research have the effect of wresting sex out of politics and history and denying the possibility of social change. Timeless and taboo, sex remains outside of what is knowable. (p. 33) See the LGBT foundation for a guide to ethical research that is more specific (http://lgbt.foundation/assets/_files/documents/may_17/FENT__1493809742_ LGBT_Foundation_Guide_to_Ethic.pdf ).

PLAY With Words: Historical LGBTQQ+ Research Narratives Setting:  Three people, one straight, one gay, one queer walk into a bar, and the academic asks, “Why isn’t one transgender or bisexual and is the very construction of this setting essentialist?”

Cast of Characters Straight: A distinguished professor emeritus in “sex research.” Gay:  A respected professor who was part of the movement to bring Lesbian and Gay Studies into academia. Queer:  An assistant professor who sees other aspects of an issue without even trying, delights in the inverted, and with an excellent publication record is well on the way to tenure.

Script Straight: The authors have asked me to introduce this section and provide a historical overview. I’m not really comfortable with this, but I’ll try to be a good sport. I’m sure much of this tongue-in-cheek writing is aimed at me and misunderstands my intention to advance knowledge through sound research. In this part of the play, the cast, Straight, Gay, and Queer, reviews literature regarding LGBTQQ+ student issues in

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higher education, heterosexual attitudes, and explores the narrative of tragic queer (Rasmussen & Crowley, 2004; Taulke-Johnson, 2008) versus what the authors term super queer. The authors suggest an alternative complex identity of capable and competent yet vulnerable queer or Every Queer. This context is voiced through three academic characters, of which I’m one. As Straight I would describe myself as a normal leadership figure in academia, but some see me as out of touch, and perhaps even poorly intended. When I first started working in sex research we were seen as having the liberal intent of rescuing this area from “the clutches of religion” (Gamson, 2000, p. 350). You have to understand that for much of my early career, until the early 1970s, homosexuality was considered a problem that we could diagnose using the sophistication of the Diagnostic and Statistical Manual (DSM). I understand why that changed, but I can still see the perspective of colleagues who wonder why some male homosexuals persist in risky behaviors and see negative aspects of homosexuality as a problem to be fixed. Gay:  Straight was my mentor when I was a grad student. That’s why we still go out to a bar every now and then. Umm . . . Straight reminds me of my dad and uncles. Sometimes things have moved so fast they seem disoriented. He’s right, lesbian and gay issues are becoming more visible on college campuses (Evans & Herriott, 2004). Nevertheless, the media and scholarly research indicate lesbian and gay individuals and students are still subjected to negative attitudes, harassment, and violence in society and on campuses (Liang & Alimo, 2005; Lugris, 2004; Taulke-Johnson, 2008). Queer:  Gay is my departmental chair or I would just skip going to the bar. It seems no one can review the literature on queer theory without harking back over the historical cannon. Gay and straight researchers have created a pervasive narrative about me that is only a partial truth so I reject it and seek to invert the very notion of understanding. The moment you think you know me you are on unsure ground. The dominant narrative of queers is that of martyr-target-victim (Rofes, 2004), wounded identity, (Haver, 1997), and tragic queer (Rasmussen & Crowley, 2004; Taulke-Johnson, 2008). You who want to fix me embraced this narrative. I am not sure the initial motives of queer allies are far from a need to hug the wounded. Take

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education for example, gay victim dominates (Harwood, 2004; Rasmussen, 2004b; Rasmussen & Crowley, 2004): “the entire gay student population is . . . defined almost exclusively by reports of the prevalence, incidents, and consequences of anti-gay attitudes and behavior on campus” (Taulke-Johnson, 2008, p. 122). This narrative is partial and pathological, ignoring “that which is positive, affirming, pleasurable, empowering, and fulfilling” (p. 122). The tragic queer narrative places emphasis on negative aspects of the LGBT communities such as likeliness to commit suicide, use drugs, become depressed (Harwood, 2004), or be harassed (Liang & Alimo, 2005). How is this need to fix so different from diagnoses and inclusion in the DSM manual? Gay: I do think though it is important to consider that studying the attitudes of heterosexuals and the dominant heterosexual campus culture might allow researchers to propose effective ways to develop an inclusive and welcoming campus culture (Evans & Herriott, 2004; Liang & Alimo, 2005). Queer (to Come on! That research “helpful” or not still sees sexuality Gay Professor): as something that can be constructed and understood. For example, I am also seen as super queer by straight liberals who are glad they have one gay friend that they can refer to by saying. . . . I can’t wait for you to meet my gay friend, or my gay friend said, or we are going to my gay friend’s home. This is a romanticized narrative, in which I am always “completely out” (Rasmussen, 2004a), a leader, a crusader, a “champion” worthy of superhero status. Let me run get my cape. Ugh . . . don’t put this on me. It is too much to live up to, too ridiculous, too stressful. Gay (In an aside Privately, I will say, sometimes Queer is exhausting. Queer to Straight and has no idea how hard we fought back then and yes still the audience): fight to get treated with respect on campuses. I know much of the respect is probably false, but it is a first step. Yes, gay and lesbian academics are aware we banded together in an essentialist contract (Halperin, 2003) to help forge our way into the hallowed halls. It worked, didn’t it? I acknowledge that Queer Theory has done much for transgender issues (Halperin, 2003), but much of Queer writing is so theoretical it would not be understandable to their own constituents (Wilson, 2000). Let me stop, if I say too much on

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this issue before I am an “Old Fag” or some kind of new gay “Uncle Tom” willing to pander to the academic community for inclusion. Straight (to Gay): I know. I know . . . ! Gay and Lesbian Studies had finally made sense to me and seemed more than the latest trend . . . good research that examined everyday life so we could understand gays better, but now this new offshoot, queer theory. I feel uncomfortable even saying the word queer out loud. We were taught not to even say the word queer anymore. I don’t even like reading it in poetry. . . . My little horse must think it’s queer. . . . Now suddenly queer is vogue. It seems anyone can be queer if you have a different idea. Gay: You don’t even need to be gay to be Queer! Straight: Also, what about gay or Queer scholarship indicates it should be written up differently? Why can’t it just be laid out in a fashion where one can find the necessary components to judge the work and use the findings? Take these authors’ work, is it a play, a poem, and what are queer asides? I find the asides annoying, glib, and interruptive of the text. This feels like messing around to me by people who couldn’t make it as straight poets. Scholarship wise much of what they say is essentialist and has been said more clearly by others. Gay: Well . . . but I do believe the writing structures you were taught and taught me all send hidden messages about knowledge and power and how these are constructed and maintained in academia. It is not just an issue of easy of transmission of knowledge. We will have to continue to disagree on how research should be represented. Queer (shaking head in disgust and addressing everyone and anyone who will listen, speaking over Gay’s closing words): Let me tell you straight I am sick of being linked with these guys. Yes, I have been victimized and patronized, but I am complex . . . more than all these identities. Call me Every Queer, Dessentialized queer. I’m queer, I delight in seeing things differently from you and will continue to try to show you what I see whether you like it or not, but I am also normal, average, like you, with a story that has room for tragedy, super achievement, and the mundane. I am a capable and competent yet vulnerable, Every Queer. Try to capture me through research if you can!

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HISTORICAL QUEER RESEARCH NARRATIVES When Maria teaches Kong, Mahoney, and Plummer’s (2002) various historical stages of research on and with LGBTQQ+ participants, the information, a notable contribution, feels somewhat dated. For example, some lesbian students have commented the chapter reads as a “gay” text. This example illustrates that regardless of the cutting-edge nature of Kong et al.’s methodological contribution, fully representing the diverse and dynamic needs and voices in the LGBTQQ+, acronym “alphabet soup” (Stone, 2009) is difficult at best. We see this inability to represent the diverse needs and voices as a weakness in the current ethical discussions regarding research involving LGBTQQ+ individuals. Thus, we attempt to ameliorate this weakness by offering an ethical stance emphasizing the complexity of persons with diverse sexual orientations and gender as holding simultaneous positions of strong/weak, mainstream/margin, and invulnerable/vulnerable, etc. See Figure 7.1 for a representation of major queer research narratives. We chose this figure first for its ability to convey meaning and second for the connotations the pink upside-down triangle represents in queer research history (Plant, 1986).

Other “Mothers didn’t want me picking up their babies. People didn’t want to kiss you on the cheek. . . . It was very isolating and demeaning. That was a long battle.” —Edmund White

FIGURE 7.1  ■  Major Queer Research Narratives

Naïve Queer

Every Queer

Super Queer

Pathological Queer

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Of vital importance in research is reflexive acknowledgment of the positioning of the researched as Othered. One can easily see that most of the historical narrative of LGBTQQ+ has been one of Othering. While researchers have argued for the possibility of researchers crossing the void to become like an insider (Mandell, 1988), it also has been argued some populations are always Othered (see Chapter 5 of this text). In this chapter, we explore the possibility that participants who are LGBTQQ+ may be inescapably Othered? (with a question mark) to denote possibilities of knowing. The motivation to know the Other may also be beneficial for the research participants because, unlike other kinds of inquiry, in qualitative research they have the opportunity to experience recognition, acknowledgment, and empathy. In this respect, knowing the Other possesses a potential for emancipation from binding stereotypes. However, the desire to know the Other can be a potential source of dominance, when it becomes a mode of sub­duing her in a network of interpretations and representations. (KrumerNevo & Mirit Sidi, 2012, p. 299) Regarding LGBTQQ+ populations specifically, we mull over this tension, referring to it as inescapably Othered? with a question mark indicating the possibility of the researcher becoming positioned as an accepted insider, accepted outsider or intentionally or unintentionally, Othering the participants. The previous discussion of researchers contributing to the narratives of Pathological Queer, Naive/Out Queer, and Super Queer as possibly an essentialized form of Othering is of note here. As researchers representing varied sexual orientations, however, we wonder: Is one of us positioned more or less as Othering when we conduct research with sexually diverse populations? How does the nexus of positionalities each of us occupies influence the researcher/researched relationship? Approaching these questions calls for a conceptual audit of Other in the existing literature. An examination of Otherness reconsiders the understandings of Other. Schwandt (2001) describes this as: being prepared for the other to speak; . . . treating the other as a being to be met and not an object to be viewed, tolerated, or disregarded; and recognizing that dialogue and conversation (not method) are the conditions in which understanding emerges. (pp. 181–182) Vidich and Lyman (2000) ask, “How is it possible to understand the other when the other’s values are not one’s own”? (p. 41). Researchers can also “potentially walk into the field with constructions of ‘other,’ however seemingly benign, feeding the politics of representation and becoming part of a negative figuration” (Fine, Weis, Weseen, & Wong, 2000, p. 117).

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As shown in the literature, studying LGBTQQ+ individuals introduces additional layers of ethical complexity to the idea of Othering, to which ethicists need continue to give consideration (Martin & Meezan, 2003). Because heterocentrism, heterosexist, and homophobia bias comprise current culture and are sites of attack for the LGBTQQ+ people and culture (Dodd, 2009; Martin & Meezan, 2003), research of LGBTQQ+ individuals is affected by a distorted “research lens, creating invisibility, and filtering out relevant . . . studies” (Dodd, 2009, p. 477). Researchers unaware of their biases have the potential to cause great harm, albeit perhaps unintentional harm.

ETHNOGRAPHY WITH LGBTQQ+ UNIVERSITY STUDENTS We reflect on experiences from an educational ethnography of sexually diverse college students conducted by Eric. We examine the literature extensively and draw on our past work with ethics and groups historically Othered. We met and discussed the topic, developed an ethical stance, and wrote this chapter. The outcome of our reflections, dialogue, and discoveries are included.

Theoretical Framework Critical theory and queer theory more specifically frame our reflections and the considerations we advance. Denzin (2014) has said, The open-ended nature of the qualitative research project leads to a perpetual resistance against attempts to impose a single, umbrella-like paradigm over the entire project. There are multiple interpretive projects, including the decolonizing methodological project of indigenous scholars; theories of critical pedagogy; performance (auto)ethnographies; standpoint epistemologies; critical race theory; critical, public, poetic, queer, materialist, feminist, reflexive ethnographies. (p. 1122) Our work is nested at the nexus of these and other postionalities as we ask ourselves who we are for the moment that we are in (Denzin). Regarding queer theory specifically we attempt to consider this question not only for subversion and inversion, but also just the everyday version of a queer reality. Throughout the history of research, the LGBTQQ+ population has been primarily researched by heterosexuals as pathological (Dodd, 2009; Kong et al., 2002), diseased, deviant (Renn, 2010), or strange and exotic (Gamson, 2000). Academically, scholars who are gay attempted to gain hold of this pathological research narrative and construct a narrative reflecting the everyday life of

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gay constituents: “[T]he strange exotic humans started doing their own research, researching and reporting on themselves” (Gamson, 2000, p. 351). Mirroring the LGBTQQ+ civil rights movement, this historical shift is clearly reflected in the advent of gay studies on campuses and of researchers who examined normalcy (Renn, 2010). Queer theory emerged from this initial movement and was marked by a critical voice (Kong et  al., 2002). de Lauretis created the academic term “queer theory.” As Halperin (2003) wrote, she had the courage, and the conviction, to pair that scurrilous term with the academic holy word, “theory.” Her usage was scandalously offensive. Sympathetic faculty at UCSC asked, in wounded tones, “Why do they have to call it that?” But the conjunction was more than merely mischievous: it was deliberately disruptive. (pp. 339–340) It was disruptive of the seemingly complacent, equitable acceptance of gay and lesbian studies by the academy and the studies relation to each other. The critical voice of queer theory, then, is less about the lives of queer constituents and more about questioning and contesting all ways of dominant, heteronormative knowing (Gamson, 2000). Because we are questioning and contesting the dominant and normative way of research ethics in general and research with LGBTQQ+ researchers and participants specifically, queer theory is a theoretical framework for this ethical stance. However, we invoke Gamson (2000) when we say it is not the only stance that defines us, and queer theory benefits from the infusion of multiple postionalities. Gamson (2000) contends researchers do not need to choose between gay experience or queer texts, the gay institution or queer discourse, or settle “the necessary competition between queer fluidity and gay solidity” (p. 360). Instead researchers should focus on “transforming the tensions on which sexuality studies have been built into new sources of productivity” (p. 360). Therefore, we position our ethical framework at the site of this tension. While we invoke queer theory, we argue for a stance Every Queer can access. An over emphasis on theoretical discussions laden with jargon limits research transparency and participants’ and constituents’ access to research, leaving only the most theory-deft academics access to queer work (Stein & Plummer in Wilson, 2002). Thus, we created a stance to fit the needs of the research participants and constituents who are not always in a queer place and do function with clearly defined “gay” identities.

Researchers’ Stance Eric: While conducting an educational ethnography of a university LGBTQQ+ Center, I learned being an ethical researcher meant more than being approved by an ethics board. When working with participants from a potentially vulnerable culture, it is critical for

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the researcher to be mindful of the various potential ethical issues that could occur. The possibility of unintentionally causing harm to the people I was researching piqued my interest in LGBTQQ+ ethical issues. Maria: As a chair of an IRB and an instructor of qualitative research, I was drawn to this topic in a roundabout manner. I developed a stance for conducting ethical research with young children that drew me into literature on diversity and persons who are potentially Othered. It is striking that each of these populations share similarities in how others speak for them, defining who they are, what they should do, and controlling their bodily expression. The extension of my work into ethics with sexually diverse groups was an easy connection. Veronica: When researching and teaching, I try to treat others as I would like to be treated. However, behind this refrain lay the tensions between my inherent positionalities: Caucasian, Christian, American, female, lesbian, educator, etc. I enter this discussion wanting to honor all people, while realizing I might not know how other people want or need to be treated and realizing research participants might not be cognizant of the potential dangers research and its dissemination pose. These realizations served as the catalyst for me to explore ethical issues further, while I continue to identify and question my values and assumptions, working toward becoming an ethically responsible and responsive researcher and teacher. See Box 7.1 for an ethical dilemma from Veronica’s research.

Educational Ethnography of a LGBTQQ+ Center In the research study, we drew on to develop this ethical stance, the dataset included over two semesters of field work as a participant observer; in-depth, semi-structured interviews; Eric’s researcher journal; and artifacts. Primary interview participants included five gay males and one lesbian. All were undergraduate students except for the LGBTQQ+ Center coordinator who was a graduate student. Primary interview participants were also part of the participant observational aspect of this study as were several individual members of the Center. Participants were observed at length as were secondary participants (e.g., several professors and their students, approximately 300 undergraduate audience members at LGBTQQ+ informational classroom panels). In addition to being an observer-participant during the interview processes and at times in the Center, Eric, also positioned himself as a participant-observer on the panels, thereby fielding questions from the audience and observing the question and answer process from the panel and the audience.

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BOX 7.1.  RESEARCH ETHICS VIGNETTE Veronica: I conducted an ethnographic research study at a university Latino student services center with two other female coresearchers. On the first day of the interviews, one of the undergraduate student participants asked us, “Do you have husbands or boyfriends?” I was taken aback by the immediacy of the question and was unsure how I wanted to answer. I have a female partner. I did not want to be evasive, but I also did not feel comfortable with the newness of the situation. While I am out as a lesbian, I was not out to everyone. My response would impact the research and my relationships and rapport with the participants.

ETHICAL AND METHODOLOGICAL CONSIDERATIONS “Like racism and all forms of prejudice, bigotry against transgendered people is a deadly carcinogen.” —Leslie Feinberg As a direct result of the suicide of a gay man and the murder of a transgender woman during the ethnographic study just described, we as research methodologists felt compelled to address the ethical uncertainties that arise in such extreme circumstances. Without clear rules or codes to guide researchers through the ethical dilemmas that arise when studying vulnerable populations, ethical dilemmas should be explored in an effort to provide guidance on possible ways to proceed as ethical, responsible researchers. In the next sections, we discuss methodological and ethical considerations in the areas of an authentic queer narrative of capable and competent yet vulnerable (see Figure 7.2), anonymity/confidentiality and risk, and aesthetic research representation.

Authentic Queer Narrative of Capable and Competent Yet Vulnerable We seek to promote an authentic queer narrative rather than the stereotypically framed historical one of tragic queer versus super queer. As we presented in detail the dominant discourse running through the LGBTQQ+ literature is that of martyr-target-victim (Rofes, 2004), wounded identity (Haver & Golding, 1997), or the tragic queer (Taulke-Johnson, 2008). The victim narrative also dominates in education research (Rasmussen, 2004; Taulker-Johnson, 2008).

156  Part II ■  Exemplars of Becoming Culturally Responsive Ethical Researchers FIGURE 7.2  ■  E  thical Considerations With Othered LGBTQQ+ Participants Authentic Queer Narrative

Anonymity/ Confidentiality Ethical Considerations

Aesthetic Representation

Conversely, the super queer is the romanticized narrative of a sexually diverse person who is uncomplicated, “completely out” at all times (Rasmussen, 2004), a leader, a crusader, and a “champion,” to invoke a Queen rock anthem, worthy of superhero status. While we, the authors, can all point to or know of people who evoke elements of super queer, and we as sexually diverse researchers and allies are acutely aware sexually diverse groups have been victimized, we also believe super status and victimization are only one part of this identity. We are proposing a more complex narrative where a person has room for tragedy, super achievement, and the mundane. We call this complex authentic narrative the capable and competent yet vulnerable Every Queer. It is this complex narrative, we challenge LGBTQQ+ researchers to document and illustrate through research. Eric: A particular instance of super queer appeared during a time when I was with my participants at the National Coming Out Day booth in the university student center. I had expected there to be at least some clear indications of disapproval from some of the passersby. Instead, those who visited the booth only had positive feedback. John, one of the participants, said he wished someone would shout the word faggot so he could beat him up! John is tall and an overall large, built person. I later wrote in my journal that I thought it might be kind of fun to witness such an event, so I secretly wished someone would use “the word.” John proceeded to talk about a time when drunk, he beat up a drunk, straight male who called him a faggot. The inversion of the queer as victim to queer as super narrative is quite evident in this scenario.

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Confidentiality, Anonymity, and Risk Including sexual diversity and transgender in a study brings forth issues of privacy and safety. Because the nature of sexual orientation is often sensitive, the participant’s “privacy and confidentiality” are of primary importance (Dodd, 2009, p. 478). Liamputtong (2007) said, In carrying out research with vulnerable people, researchers need to be more ethically responsible for their lives and well-being so that they do not make them more vulnerable. Although ethical issues are important for all research, sensitive researchers must be more cautious about the confidentiality, privacy, anonymity, and safety of their participants. (p. 191) We believe it is worth taking a moment to review the meanings of the terms confidentiality and anonymity as related to human research and IRB guidelines. Please see Chapter 4 for a more extensive review. Maintaining confidentiality of information collected from research participants means that only the investigator(s) or individuals of the research team can identify the responses of individual subjects; however, the researchers must make every effort to prevent anyone outside of the project from connecting individual subjects with their responses. Providing anonymity of information collected from research participants means that either the project does not collect identifying information of individual subjects (e.g., names, address, Email address, etc.), or the project cannot link individual responses with participants’’ identities. A study should not collect identifying information of research participants unless it is essential to the study protocol. (Virginia Tech Institutional Review Board, 2017) Relational research will rarely be anonymous, but depending on the participant’s wishes, confidentiality should be enhanced to the greatest extent possible. Developments in technology increase the possibility of anonymous research for highly sensitive topics. It may be certain participants or groups will wish to have their identity known such as a case study of a LGBTQQ+ advocacy group or Pride narratives. In these instances, researchers should work closely with their research ethics boards to attempt to honor the participants’ wishes. We know from experience and the literature research ethics boards will not always allow this. In one case, a researcher reported, “They made me change the reporting of names to be completely anonymous even though almost all of my subjects WANTED to be identified in the study—it was a Pride organization whose entire goal was about being out and proud!!” (Irvine, 2012, p. 32).

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Youth While some areas of LGBTQQ+ research will not be sensitive, there are areas that might include people who are highly vulnerable as seen when several vulnerabilities or sensitive issues overlap such as orientation, age, suicide, and high-risk behavior. One such research area is youth who are LGBTQQ+. If harm is possible in studying LGBTQQ+ individuals this is even more so for LGBTQQ+ youth (Dodd, 2009). When studying minors, parental consent is typically required due to minors lacking legal capacity to consent. In this scenario, contacting the parents who are not supportive of their child or are unaware of their child’s orientation for consent could jeopardize the youths’ well-being, including issues of safety and family relationships. Goredema-Braid (2010) cites this exact type of research situation saying, The [researcher] . . . rightly refused to go down this route, and the decision of the [ethics] committee . . . meant that an opportunity to explore an important topic was lost through an insensitive approach, one which not only demonstrated a lack of understanding, . . . but also of the broader ethical issues involved in researching young people’s sexuality. (pp. 29–30) Mustanski also reported a similar situation where the research study, which was part of a grant, was held up for 10 months by the IRB due to the issue of sexually diverse youth consenting without parental consent. Highlighting IRBs that create research blocks Mustanski explained, I can say from my conversations with many researchers in the areas of adolescent health and HIV prevention,” he observed, “that researchers shy away from doing research on adolescent [men who have sex with men] because of the belief or experience that they could not receive IRB approval to do that work. (National Research Council, 2013, p. 24) Similarly, to Mustanski, we recommend IRB boards use the state medical guidelines for what age a minor may receive medical care without a parental consent as a starting place or precedent for this discussion (National Research Council, 2013). Also, when a research ethics board is reviewing in an area they have little knowledge in, it is important that they utilize the researcher’s expertise and the expertise of other scholars on their campus. At Maria’s university, if the research ethics board is concerned about an area they do not specialize in, they ask the researcher to find precedencies for the research to share with the ethics boards, consult with other scholars on the campus from the area of interest, and draw on the expertise of the researcher making the request. This process has always been educative and efficient.

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Aesthetic Research Representation When representing data in which participants disclosed information others might hold against them, Banks (2008) contended the researcher has an ethical obligation to “know enough about the society or community . . . to anticipate” potentially harming situations (p. 88). This methodological issue brings forth a beginning awareness and attention to how audiences will react to Othered participants and what methods (e.g., visual research methods, alternative genres, alternative formats) we could employ to best represent the participants and their too often silenced voices (Collier & Collier, 1986), while maximizing participant confidentiality. We highlight the issues of confidentiality and authenticity. First, the possibility for the representation to enhance the confidentiality of the participants should be considered. A composite (Rossman & Rallis, 2011), collective or multivocal voice is a method of representation that allows for increased confidentiality, weaving various pieces of the data into one whereby multiple participants or research days or settings become one participant, one day, one setting. In this representation method, each piece of data would have actually occurred, but would be woven together to represent one collective day or one collective identity. An exemplar of this may be seen in Howell’s (1973) creation of a day in the life of the participants. Odendahl (cited in Odendahl & Shaw, 2002) said, “This method . . . does not reveal the identities of study participants but allows a closer look at patterns and nuances. . . . The personal features and life experiences are factual and realistic . . . [and] combined from the accounts of several people who are similar” (p. 313). A collective or multivocal voice has similarities to a composite but may not be crafted to seem like one unified whole, but instead may have fractures that are deliberately created to allow the reader a deeper understanding that many are speaking as one. Eric’s multivocal poem is drawn from multiple interviews with university students speaking of the impact of a friend’s suicide. The interweaving of the voices also increases confidentiality since no one person is represented in-depth. Listen as they speak: I’m only dreaming . . . This is one of those. . . . I’m-going-to-wake-up-sort-of-things . . . Whatever . . . I did that all the way up to the funeral . . . That’s when it hit me . . . This is for real. I’m still pissed at him.

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Yesterday, he was fine. I knew this person . . . Now, he’s not alive. Great . . . we’ve lost another one . . . (Teman, 2010) A second idea in representation is that aesthetic representations might highlight the voice of the vulnerable participants more authentically (Collier & Collier, 1986). We place emphasis on the word might since any form of representation may also be inauthentic depending on the ethics of the researcher and the efforts made to represent authentically. Aesthetic repersentations have been advocated for, to name a few, with the use of research poetry (Liamputtong, 2007, Lahman et  al. 2010, 2011; Lahman & Richard, 2014; Teman & Richard, 2017), short stories/fiction (Liamputtong, 2007), fractured narratives (Kilgard, 2014), and ethnodrama (e.g. Sangha, Slade, Mirchandani, Maitra, & Shan, 2012). Lahman et al. (2010) referred to poetic interludes within a larger prose article as “a natural extension of Lather’s (2007) notion of providing interludes in a research or scholarly text” (p. 47). The interludes serve as a break in the traditional text and provide the personal view of the authors (Childers, 2008). Poems distill the data to its essence and may provoke the reader to new insight (Furman, 2006). Kilgard (2014) adds that narrative may be fractured to reveal how we are normal and resist being normal simultaneously saying, “By juxtaposing multiple voices—including scholarly quotations, . . . . narratives, and performance description—I create a fractured narrative” (p. 95). An invigorating component of ethnographic literature is the discussion that ethnographers may write cultures into being. Ethnographers have been encouraged to employ writer’s strategies such as metaphor, irony, tragedy, satire (Noblit, 1999), montage (King, 2000), and anecdotes, vignettes, or a “dash of panache” (Wolcott, 1995, p. 205). Working in a similar vein, Van Maanen (1988) has identified primary ways ethnographers represent data: realist tales, characterized by an absence of author from finished text to purport a “real” account; confessional tales, characterized by the author’s voice being present, relay behind the scenes researcher experiences; impressionist tales startle the reader with rich sensory oriented accounts; critical tales have a Marxist stance; formal tales are specialized under terms such as symbolic interactionism; literary tales draw on fiction techniques; jointly told tales are told between ethnographer and participant. Pathological tales have been added in the area of queer theory to underscore how the LGBTQQ+ community has been researched and represented during most of the history of research (Taulke-Johnson, 2008). Building on queer terms, we have added straight tales, which is similar to a realist tale; gay tales which are research representing gay life and issues written by LGBTQQ+ researchers and allies; and queer tales which fundamentally work against and seek to dismantle

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the unified, dominant mindset of a straight or gay researcher. These primary ways of identifying tales while essentialist allow for rich discussion with other authors about what one is attempting through different writing forms. Within these “tales” we have developed a voice, which we term queer asides. An aside is “a dramatic convention by which an actor directly addresses the audience but is not supposed to be heard by the other actors on stage. In Renaissance drama, the device was Picture the queer asides widely used to allow inner feelings written on lavender flags. to be made known. “In the nineteenth century the convention was used for melodramatic and comic effect. . . . An aside is assumed to be truthful” (Harmon & Holman, 1996, p. 43). By queer asides we are indicating both the lack of the inner voice of the researcher in traditional research texts and the intent to provoke thought and illustrate discourse that is often hidden from the dominant community or a different “truth.” The queer aside, similarly to interludes, provides a different view of or voice of the authors. Queer asides may frequently be more informal or orient the reader to the text in a new way. They may also be seen as deliberately disruptive to the traditional writing process. Researchers not working in a queer area or from a queer stance may wish to use same idea as a critical aside. In advocating for poetry, Harmon and Holman (1996) contended “poetry has significance; it adds to our store of knowledge or experience. . . . The existence of an idea, a significance, a meaning, an attitude, or a feeling distinguishes poetry from doggerel” (p. 398).3 Due to our work in this area we illustrate the representation of research poetry. As we struggled with how to represent the experience of murder and suicide, we were drawn to poetry. I Am ALL Woma[e]n!4 Angie Zapata was a woman.

all said woman.

The way she

A transgendered woman

walked,

who played with “girl stuff ”

talked,

and felt female

dressed . . .

since the time

A poor poetic attempt including monotonous rhyme, cheap sentiment, and mundane subject matter (Harmon & Holman, 1996). 4  These research poems were created through a process Maria described as artifact or archival poetry. Maria conducted an Internet search of the local newspaper for all references to Angie Zapata’s murder. Over 100 references were analyzed, Maria sought to retain the voice of the media with the only deliberate change being references to Angie Zapata as “Angie” rather than using the media convention of calling her “Zapata.” 3 

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she was a toddler. Mother Maria, “She carried herself as a woman. She was beautiful.” The suspect discovered she was actually a man, admitted to beating Angie with a fire extinguisher. Angie, 18, died from blows to the head and face. Transpanic Defense Heat of passion defense. She is a he. Angie was at fault for her own murder because she was a transgender woman. A woman.

He snapped. He was outside of himself. He lost control . . . He thought he had killed “it.” He killed her because of an intense hatred for homosexuals. “It is not like shooting a teacher or a straight law abiding citizen.” There is a difference between killing someone who is homosexual and someone who is not. “Gay things need to die.” Zapata [Angie] Remembered at Candle Light Vigil Those gathered shared their fondest memories: riding bikes; receiving hairstyle advice; trips to MacDonald’s. We are all part of the human family. (Lahman, 2011)

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Adhering to Culturally Responsive Relational Reflexive Ethics As researchers studying potentially vulnerable participants, we maintained awareness of the eight tenets of Culturally Responsive Relational Reflexive Ethics (CRRRE) (see Chapter 2) and the need to always be becoming. When the goal is to hear and represent participants’ voices and experiences, viewing ethics at a finer level of detail through the CRRRE lens will assist the researcher in achieving a deeper understanding of their participants’ lived experiences. As CRRRE researchers who are becoming, we strive to accommodate the participants rather than the participants accommodating the researchers. In other words, we are “focused on creating research environments that best meet the participants where they are at and allow for new ways to understand and co-construct knowledge” (Lahman et al., 2010). To counter Othering with people of diverse sexualities, researchers might utilize relational research processes (Ellis, 2007), co-construct the research, or perform member checks and processes responsiveness (Lahman et al., 2010) in the hopes of minimizing participant situations of always being Othered and allowing participants access to researcher depictions. By considering each of the tenets of CRRRE prior to engaging with participants, while researching with participants, and during the analysis and writing stages; the researchers’ findings will maximize authenticity and representation of the participants’ multiple positionalities.

INESCAPABLY OTHERED? Transgender and even gender can be a difficult part of diversity for many to understand. Transgender is about gender identity and not sexual orientation and, therefore, may be a challenging fit in LGBTQQ+ groups (Stone, 2009). It is of note that the narrative of Stonewall relates one of the first persons, Sylvia Riveria, who said no to authority was transgendered. We end with a reflection on a pedagogical experience about transgender in Maria’s educational ethnography course that illustrates the possibilities of Becoming. Maria: I am teaching a class period on diverse research constituents and wish to draw on my recent experience with the murder of Angie Zapata, a transgender woman. I had created an archival poem from newspaper articles on Angie’s murder and historical trial. I wanted to set up an experience that would allow my students, if they were not already engaging in this type of reflexivity, to join me in thinking about how as researchers, our constructions of gender influence research. As small groups of students engaged with newspaper text creating archival research data poems and word clouds, I listened to discussions of how to represent life/death and love/hate. Students’ said . . .

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I think [this process] is almost like a memorial. It made me really think about her as a person instead of as a victim. There were a number of people . . . who didn’t know much about the case. Spreading the knowledge is illuminating. We learned how much one person can impact our lives even if we never knew them. Are we, the researched and the researcher, always to remain distant from each other, catching glimpses through a foggy glass and inescapably Othered? This distance is possible, perhaps even probable. We believe no one can truly know someone else or truly know himself or herself. However, “ethical relationship is grounded in the notion of being-for the Other” (Schwandt, 2000, p. 204). Therefore, we close by stating: It is in the trying that truth is found, in the attempt that human connects to human, through the struggle that researcher and researched move from Other to one another.

Reflexive Questions Experience with personal and others’ sexual orientation and gender:   1. What are my, my family’s, community’s, and research constituent’s experiences with sexual orientation and gender?   2. How have my experience impacted my sense of felt safety?   3. How have my experience impacted my sense of belongingness?   4. What does gender mean to me, my family, community, and research constituents?   5. How should I try to navigate heterosexual privilege/power discrepancies regarding my research?   6. What is the potential impact of stereotypes on my research? Discipline training regarding diverse sexualities and gender:   7. What are my academic discipline’s biases/assumptions?   8. What topics might trigger challenges from my past?   9. How might other academic disciplines perceive this topic?

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Research Issues 10. What are potential concerns of cross sexual orientation or gender research, as in the researcher and participant do not have the same orientation or gender? 11. What is the potential impact of age differentials in sexual orientation and gender research? 12. How should a researcher balance their personal right for privacy with the need, in relational research, to be transparent? 13. Can one withhold information as a researcher and be ethical? 14. How does a researcher balance personal safety with a need to participate first hand in ethnographic research?

Reflexive Course Experiences See Appendix F for details on the following course experiences that complement this chapter: History Alive; Ripped From the Headlines; Words Matter; Expert Panel, Debate or Flip-Flop-Debate; Speed Discussion; Doodle IT; Word Clouds; Interview a Researcher. Since the Internet is always changing a course experience could be to collect recent resources on research ethics for LGBTQQ+ populations. A research ethics issue to debate could include the following: 1. When are aesthetic research representation warranted? 2. Where do you stand on the need for insiders to conduct sensitive research or research with cultures that historically have been marginalized?

Resources It is disheartening to see how few resources there are regarding ethics and research. APA has a well-developed code for psychologists working with LGBTQQ+ populations that includes a subsection on research. http://www.apa.org/pi/lgbt/resources/guidelines.aspx

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LGBT Foundation’s website says the “LGBT Foundation, formerly known as The Lesbian & Gay Foundation (The LGF), is a national charity delivering a wide range of services to lesbian, gay and bisexual and trans (LGBT) communities.” The foundation has developed a research ethics guide for LGBTQQ+ groups. http://lgbt.foundation/assets/_files/documents/may_17/FENT__1493809742_ LGBT_Foundation_Guide_to_Ethic.pdf

Books Meezan, W., & Martin, J. I. (2009). Handbook of research with lesbian, gay, bisexual, and transgender populations. New York: Routledge. This handbook has two chapters on ethics specifically and is a good resource overall. Murphy, T. F. (1997). Gay science: The ethics of sexual orientation research. New York: Columbia University Press. Plant, R. (2011). The pink triangle: The Nazi war against homosexuals. New York: Henry Holt.

8 ETHICAL RESEARCH WITH PEOPLE WHO ARE HOMELESS “My Mind’s Not Homeless” Jeffery D. Roche, Tyler Kincaid, Maria K. E. Lahman, Suzanne V. Landram, Veronica M. Richard, and Trent L. Lalonde We think sometimes that poverty is only being hungry, naked, and homeless. The poverty of being unwanted, unloved, and uncared for is the greatest poverty. —Mother Teresa

B

ag lady, beggar, bum, derelict, dirty wretch, drifter, gutter punk, hobo, panhandler, street dweller, street person, tramp, vagabond, vagrant, wino. Who has not heard these words, seen them depicted in the media, or perhaps used these terms, even lightly (picture yawning and stretching and saying without thinking, “Wow, I feel like a lazy bum today”)? Most of the words imply meaning beyond the superficial, carrying at the least a sense of unease about a person’s reliability and work ethic, moral judgment, or reference to substance abuse, and at the most outright, slurs and aspersions. It is of note, when looking up the

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definition of the word homeless, the word displaced is sufficient to summarize the term; yet, of the 27 synonyms provided, 16 have negative connotations regarding the possible character of the person who is homeless: banished, deported, derelict, desolate, destitute, disinherited, down-and-out, estranged, exiled, forlorn, forsaken, friendless, outcast, unsettled, vagabond, vagrant (Thesarus.com). These words quickly evoke images of a person who is deserving of an unhoused state and is better kept hidden from a housed society’s eyes. In the following excerpt from a research poem,1 the authors (Gunn, Rikabi, & Huebner, 2013, p. 12) attempt to humanize the un-housed person. Do You See Me? It’s cold and raining . . . A cough takes my breath as the newspapers melt around my body . . . The soup from the shelter is long gone, . . . and you had no change; I have no supper. I am invisible, acrylic, glass; I do not exist to you. If you have no change, a smile will do. Rest your eyes on me, if only for a second. Show me I am real, human, someone, anyone, for I am alone In light of the recent economic recession, the increase of homelessness, and persons who are displaced and/or highly mobile, the need to consider issues when researching homelessness is pressing. Therefore, the purpose of this chapter is to advance researchers’ level of awareness and ethical consideration when working with participants who are without a home. We review the literature of persons who are homeless and/or highly mobile and vulnerable participants. Having been research ethics board reviewers, researchers of participants who are homeless, and/ or personally homeless, we describe and reflect on our experiences throughout. We do so by briefly describing the research we conducted, relevant ethical dilemmas, and reflecting on our experiences with people who are homeless. Throughout the chapter, we interrupt the traditional scholarly text with narrative apercus to share our experiences, allow room for reflection, and provide glimpses of our personal voices. Finally, ethical research considerations and strategies in the areas of power, access, compensation vs. coercion, and Culturally Responsive Relational Reflexive Ethics (CRRRE)-oriented research are advanced.

 See Chapter 7, page XXX of this text for an explanation of a research poem or Lahman et al. (2010).

1

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Veronica: Small town, big city . . . In the small town I am from, homeless people are rarely seen. Perhaps, they are easier not to notice, turn a blind eye. I see them every day and do not know they are homeless because their outward appearance leads to other assumptions. In this small town, the invisibility of people who are homeless is the norm. . . . In the big city, it is quite the opposite. Here they position themselves in visible places, in visible times. Young and old, male and female, all colors visible on the streets, on the sidewalks, on every corner. Self-made, cardboard signs relay each person’s particular situation: disabled veteran, father of two, single mother of four, hungry teenager. . . . If my vision isn’t blinded by thoughts of daily tasks and pressures, I see the remnants of night dwellings in high-rise doorways, under trees, between concrete viaduct pillars—tents, self-made and store-made, sleeping bags, clothes, wheeled baskets, cups of coffee, filled garbage bags piled high. Through these experiences, I realize the visible and invisible nature of homelessness resides in me. What do I choose to see? Why? How does my level of comfort dictate what I see? How do my assumptions give light and shadow to the people’s lives before me?

CURRENT CONTEXTS OF HOMELESSNESS “We have come dangerously close to accepting the homeless situation as a problem that we just can’t solve.” —Linda Lingel Homelessness, also referred to as rough sleeping in parts of the European Union, such as the United Kingdom, is a complex social issue, and as a subculture, people who are homeless are mainly hidden from the housed citizen. Around 4 million people in the European Union are struggling with homelessness (Welfare Society Territory, 2016) with countries such as the United Kingdom having up to a 30 percent increase in homelessness since 2014 (Young, 2015). With millions living without nightly shelter, and more in shelters and family and friends’ homes, the harsh realities of brutal street life consume men, women, and children. These individuals may be forced into prostitution, subjected to violence, or lost to the tragedy of mental illness and substance abuse (Nooe & Patterson, 2010). In recent years “the housing crisis and deep economic downturn have generated a marked surge in homelessness and residential instability that lingers along with the Great Recession” (Masten, 2012, p. 363). Along with homelessness, there are also those who are recently displaced (e.g., in a different home and/or highly mobile). Reflecting a 13 percent increase from the previous year, over 1 million K–12 grade students in the United States were identified as homeless (Masten, 2012 citing

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the 2012 U.S. National Center for Homeless Education report). The identification of the fastest growing category of homelessness being families with children (National Center on Family Homelessness, 2008, 2009) provides one more argument for the need to ethically research the phenomenon of homelessness being as pressing as ever. Arangua, Andersen, and Gelberg (2005) shed light on the increase of homeless women and women with families, from an estimated 3% of the population of those who are homeless in 1964, to 32% in 2006, in what they refer to as the feminization of homelessness. The increase of women with families seeking transitional care, in turn, has put a greater demand on educational services provided to the homeless, such as child daycare and education (Coker, Meyer, Smith, & Price, 2010). Similarly, the fastest growing category of homelessness is families with children (U.S. National Center on Family Homelessness, 2008, 2009). To help account for this influx of children, the U.S. National Center for Homeless Education (2006) calls for support from higher education institutions in serving homeless youth wanting to acquire a college education. This support, they believe, will enable these youths to “break the cycle of poverty and move towards a brighter and more stable future” (p. 6). See Box 8.1 for more information on homelessness in the United States.

BOX 8.1. SNAPSHOT OF HOMELESSNESS IN THE UNITED STATES The U.S.-based National Alliance to End Homelessness reports as of January 2015: • 564,708 people were homeless on a given night in the United States, of which {{ 206,286

were people in families

{{ 358,422

were individuals

{{ about

15% of the homeless population (83,170) are considered “chronically homeless”

• about 2% (13,105) are considered “chronically homeless” people in families • about 8% of homeless people (47,725) are veterans The statistics are from counts conducted, community-by-community, on a single night in January biannually. The Department of Housing and Urban Development (HUD) requires a community to submit these data every other year to qualify for federal homelessness assistance funds (www.endhomelessness.org/pages/ snapshot_of_homelessness).

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Once homeless, people usually fit into one of three categories Nooe and Patterson (2010) identified: first time, episodic (experiencing situational episodes), and chronic (long-term, often defined as a disabling condition). There is an extensive body of research regarding persons who are homeless in the social sciences (e.g., Arangua et al., 2005; Israel, Toro, & Ouellette, 2010; Liu, Stinson, Hernandez, Shepard, & Haag, 2009; O’Reilly Taylor, & Vostanis, 2009; Van Doorn, 2010) and research specifically related to education (e.g., Buckner, 2012; Masten, 2012; Miller, 2009). For researchers, people who are impoverished or without a home may be viewed as vulnerable in part due to their lack of social power and have been termed as socially vulnerable (Liamputtong, 2007). Indeed, research ethics boards may dictate this status. Consider the social power and dignity that comes with privileges so fundamental we may not consider them: clean clothes, a washed face, a good night’s sleep, private toileting facilities, food, warmth. This vulnerability, coupled with the transient nature of homelessness and biopsychosocial risk factors (Nooe & Patterson, 2010), leads to larger problems within the phenomenon (e.g., substance abuse, mental illness, social isolation, sexual abuse, criminal activity, and prostitution). Challenges such as these increase the risks in conducting research with a “vulnerable” population (Nooe & Patterson, 2010), both for the participants and the researchers, making it difficult to enhance the understanding of homelessness. Furthermore, the transitional nature of homelessness makes conducting follow-up and longitudinal research, let alone meaningful in-depth homelessness research, problematic at best. Therefore, we advocate for researchers of the homeless to include a methodological statement about how they accessed the research participants including a reflexive ethical section on the research process. This ties back into the term, hidden population, Liamputtong (2007) uses to describe groups such as the homeless. In any follow-up research, meta-analysis, or meta-ethnography, the researcher will want to note where the sample is from, whether samples are from shelters, which has been our experience, and what type of shelter (e.g., church, government, secular nonprofit, overnight, or transitional). As a chair of a university research ethics board, I, Maria, have primarily reviewed studies involving those who are homeless accessed through shelters. This is a different sample than persons who only access shelters in extreme weather, who live with family or friends, who live in homeless communities such as box cities, or who are perpetually nomadic, utilizing accommodations such as truck stops and lifts from truckers. This sort of methodologically rich detail will allow researchers to have more than insubstantial breadcrumbs to follow as they negotiate gaining access to homeless research participants. Jeff: My first experience officially interacting with individuals who are homeless was in a Street Outreach Program through AmeriCorps. During an effort to distribute clothes, food, and resources, I was conversing with an engaging fellow, when I suddenly found myself receiving a quick peck on the cheek as part

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of his story. From this and many other varied encounters, I gained confidence in my ability to handle unexpected and uncontrolled experiences in the field. I thought this confidence would transfer to my first endeavors with conducting research on homelessness. I found myself warding off trickles of anxiety as I introduced myself to my first participant. Evidently my anxiety was apparent since during the interview the participant encouraged me to, “Relax, man.” Upon reflection, I knew my anxiety came from my tentativeness as a fledgling researcher, but I couldn’t help but wonder what his interpretation might have been. My mind wandered to Fiske’s (2010) stereotype content model, which has found people hold the belief that those who are homeless are low in both warmth and competence. Although I never followed up on this, I worried he might have attributed my anxiety to this pervasive stereotype. Since then, I have been conscious of how uncontrollable attributions might affect my working relationship with participants.

PEOPLE WHO ARE HOMELESS AS VULNERABLE YET CAPABLE AND COMPETENT “People can show that they care about the community and about people that are strangers. . . . not just handing out a dollar to the guy with the cardboard sign. Maybe some big smiles, a warm look, kind thoughts.” —Vick, a research participant without a house While the issues of why someone is homeless and how best to serve those who are homeless are controversial (type into an Internet search the words homeless and hate if you want a quick and ugly view of the controversy), perhaps we can all agree a child has done nothing to “deserve” living without a home. It is from this aspirational assumption and point that we extend the nations’ conversations on homelessness and poverty to research. Participants who are homeless have been described as vulnerable and in need of protection in research (Liamputtong, 2007). Similarly to preceding chapters, we wish to complicate this stance by describing the participant who is homeless as capable, competent, yet simultaneously vulnerable. People need to acknowledge a person’s highly specialized, acquired skill and ability to live without a house or on the street and attempt not to paternalize an entire category of persons. Those who are homeless have likely been housed before and may be housed again. The time at which a researcher and a participant who is homeless meet is but one point in a complex life. The highly “vulnerable” person being researched may also be the leader of a family, have job responsibilities, and a high-level skill set. Similarly, the researcher might have previously been, currently be, or someday be

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homeless. As Third (2000) poignantly describes, research with “people without shelter can . . . be one of the most humbling and positive experiences within a research career” (p. 457). It is from this stance we advance methodological considerations when researching participants who are homeless. Suzy: No one ever warns you this could be someone you know, let alone someone you may care about . . . let alone someone in your family. It makes you feel just awful inside . . . resonating as a lump in the back of your throat. Where are they . . . are they doing something they shouldn’t . . . are they okay? These thoughts creep into my head at random times. “How can this happen?” . . . “Is there something I can do?” . . . At times, you wonder if they really love themselves. Why can’t they keep a job? But it doesn’t work that way . . . all the money he had he spent on Christmas presents, good presents for the whole family. At one point, he thought about rejoining the army, but then the “episodes” started becoming more and more ostensible. When the “episodes” became too severe he was advised from all of his loved ones to go to the Veterans Association (VA) for treatment . . . what else could they do? But the VA can only do so much. The irony is, I didn’t even like him at first, but that’s the thing about in-laws when children are involved. You are bound together by a force, as they say, thicker than water. He’s been living in the Salvation Army for some time now with others. . . . What’s his story? . . . He’s a homeless transient veteran of the United States’ Military who suffers from mental illness, and he’s not even 35. So once again, here I sit asking myself questions with no gratifying answers: “Could he harm my family?! Can he recover?” The thing that astonishes me the most is how many, in this situation, wish better for their loved ones but not for themselves. I’ve always been the type of person who gives spare change to people on the street and who gives food to someone who’s hungry. It makes me feel good to help others, selfish really; but out of the years of doing this “good” deed, I don’t know if I’ve ever truly thought about what type of person I’m giving to. But now everything seems different, now it seems I’m always recognizing this person asking for spare change . . . not born into this lifestyle . . . and each one has a story and someone in this world they care about and that cares for them.

THE RESEARCH CONTEXTS WE REFLECT ON “. . . before, I used to think of parents who became homeless, with their children, it was because of addictions, or alcoholism, or just not putting forth the effort. . . . when I found myself in that position . . . it was like, ‘Whoa . . . I’m trying

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everything possible to keep . . . above water.’ . . . I have a lot of pride. So all of this has been very difficult.” —Dorothy, 40-year-old single mother of three adolescent boys in a transitional shelter I, Maria, deliberately assembled this methodological team to reflect on ethics due to our experiences with persons who are homeless (Tyler having been homeless), experiences with research ethics, and experiences as methodologists. Additionally, several of us are or have been highly involved with the U.S. research ethics board as a co-chair, or past reviewer, and hold human research compliance certificates. Tyler developed and implemented a phenomenological study to examine closer the pathways into homelessness. He focused on interviewing families who were homeless and resided in one particular transitional shelter that provided on-site access to job training, social workers, and life skills training. Subsequently, the director of the shelter shared with Tyler and Trent the longitudinal records she had collected regarding the shelter. These data consisted of the length of stay of each family, as well as demographics such as age, gender, employment status, education level, and number of children. Trent worked closely with Tyler throughout the process of analyzing these statistical data to understand better the length of stay of families staying at the shelter. Concurrently, Jeff designed and conducted two studies about paths to homelessness and counter-narratives at the same homeless shelter. This shelter was affiliated with a Christian organization. The research consisted of artifact analysis, observational data, and narratives collected via in-depth interviews with members of the shelter (Roche, 2012). Drawn to many aspects of this shelter’s community, Jeff began to volunteer there regularly, utilize his research to inform consultations with shelter staff, and later conducted a holistic case study, which included participant observation and in-depth interviews. I supervised the research aspects of one of these experiences. Tyler: On a recent trip to Washington DC, I couldn’t help but stand still, struck by the people sleeping on the sidewalk. The cold weather had driven the homeless from the shadows to the middle of the sidewalk, lining the subway vents, trying to stay warm. I couldn’t believe the picture of every human stepping over another human without a break in their conversation, text messaging, or Facebook post. Reflecting on the trip months later, I remembered my experiences as a homeless youth and the contrast of feeling invisible yet completely rejected simultaneously. If I asked for spare change from someone, it seemed with no trouble they would walk past me, around me, or over me. I was 17, dirty, completely broke, smelly, 6’2” and 220 pounds, but seemingly inaudible and invisible. At the same time, I remember being asked to leave public parks on a daily basis, while

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supposedly causing enough trouble to be escorted away by the police for quietly sitting on a park bench watching the world go by. I remember feeling my existence as a person was forbidden. I also think how now, as a well-dressed doctoral student, I would never be asked to leave a public park. Now, I wonder what the implications are for ethically researching a population criminalized for their existence and purposely ignored at the same time. What can I do to make this problem more understandable to those who don’t seem to understand? How can I research this population without making it a selfish conquest to make myself feel better, to feel like “I” make a difference? This should not be about ME. It is about THEM, and since we are all a paycheck from being homeless, it is about YOU.

ETHICAL CONSIDERATIONS “ . . . my mind is not in this place [homeless shelter]. You know what I mean? My body is, but my mind’s not. Like, my mind’s not homeless.” —Einstein, a research participant In this section, we review ethical considerations in the areas of power, access, compensation vs. coercion, and CRRRE research.

Power Power may be seen in many areas of research with the homeless including our very language. At the outset of the chapter, we illustrated the power of the housed and the disenfranchisement of the unhoused. We contend that even the term homeless has powerful connotations that are frequently left unexplored. Others have made this point by calling research participants “unhoused men” (Duneier, 1999, p. 49). A house is a dwelling or a shelter and the term is not necessarily imbued with the sense of a loving family; whereas a home, “being at home” or “feeling at home” has nuances of family, familiarity, ease, appreciation, comfort, warmth, and caring. These nebulous characteristics are clearly illustrated in the saying home is where the heart is. As demonstrated in Tyler and Jeff’s research with individuals and families in homeless shelters, people who are homeless may attempt to create a sense of home wherever they are. While some privileged persons, owning a house, might not know what it feels like to have a home or be at home. Throughout, we attempt to use person-first language (Blaska, 1993), which although ungainly, underscores the need to consider the person first, and not only their lack of a home. Person-first language, seemingly to originate first in special education, is thought to be an overzealous attempt at being politically correct by some (Vaughn, 1997). The argument for people-first language is that by putting the person first, we may avoid deliberate and subconscious dehumanization (Blaska, 1993). This is illustrated in our use of the phrases a participant without a

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home, or a person without a home. While this type of language does not come naturally (since adjectives in the English language are generally placed before nouns), we believe it is worth dealing with the longer phrase and the slight awkwardness provides space for recalling shared humanity. What we say and how we say it matters. However, our intent is not to stifle conversation, learning, and becoming by overcorrection of others’ language to the point where voices are silenced. Along with the often-hidden power in everyday language, researchers will wish to consider their own personal power and status as a most likely housed researcher. Even the most reflexive, relational researcher in all likelihood emerges from a study only being sure they have personally benefited from the experience and knowledge gained as opposed to the benefit that is claimed for the larger society and research participants. The majority of research ethics board applications I review state that the participant may benefit from considering the issues the researcher has chosen to pose to them. It is important to ask if any research, but especially this piece [research with the homeless], will benefit the people that are being studied and not solely the researcher. Researchers benefit from publications, tenure and promotion from publications, by speaking engagements and travel to other places to present the research, and by a fame of sorts as the researcher becomes the sought-after expert. (Gunn et al., 2013, p. 6) Gunn et  al. (2013, p. 7) also ask researchers to ponder what the potential impact of the research on the participants might be: —— Is the research an attempt to socially control the homeless by discovering remedies of the situation through research? —— Does the person who is homeless want to be rescued? —— What is the implication of the context when a person who is homeless has no direct control over their surroundings, literally no door to shut, and can only walk away? (bullets added) I have stopped at the iron wrought gate to my sister’s brownstone in Maria:  Manhattan, NYC. Just this simple description should allow you to position me as wealthy and housed. I don’t want to stop and help with what I see. I am scared and feel repulsed, but I am compelled by something bigger than my immediate feelings. My sister firmly states, deferring to my minimal emergency care training, “You do what you think is right and I’ll back you up.” I look closely at the woman on the ground, blood-matted hair, dripping from a sizeable gash in her head onto the icy sidewalk. “Call 911. Get plastic gloves or plastic grocery bags, and something for a compress. Take the baby inside.” She rushes off and I am

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by myself. I squat down, and the rest externally plays out, as you would imagine. “Hi, I want to help you. May I look at your head? May I touch you?” I am sure I seemed competent, but inside I was full of random, queasy thoughts, “Am I looking at someone’s brains?” I have never seen the yellowish fat under a skull. “What is this?” “Is this woman the ‘least of these’?” “When will my sister be back?” “How long will it take for the ambulance to come?” When the police arrive, I am struck by their contempt for the woman, confirming she is homeless. “Lady, I wouldn’t touch her with a ten-foot pole,” one officer tells me. So I am a hero in some “Law and Order” episode. I wonder, later when I tell this story, will I say how much I did NOT want to help? Do I ever tell my students who study the homeless this story? The homeless DO startle me, I DO try to ignore their plight (it is too heart wrenching, seemingly unsolvable), I DO know I am, as we all are, one friend or relative’s couch away from being without a home which is why I NEED to block this out. I never see the proud iron gates of NYC row houses in the same way again, and sometimes I think of the woman, who while living on the streets had her head bashed on a wrought iron fence by her boyfriend. Where is she now? How am I so fortunate that her pain allows me to grow?

Access Researchers have discussed how difficult it can be to access people who are homeless (Liamputtong, 2007; Tierney & Hallett, 2009; Wasserman & Clair, 2010). People who are homeless represent a group referred to as a hidden or hard to reach population in research (Liamputtong, 2007; Wasserman & Clair, 2010). These groups may be directly in front of us yet “invisible” if we have no way of determining their housing status, or they may be “invisible” because the average person does not go where their homes are (e.g., under bridges). Where to access participants and how to assess their ability to consent are confounding aspects of research with the homeless (see the chapter on immigration for more on this issue). There are two main ways to access people who are homeless. First, one may attempt access in public places where the homeless are known to congregate. This may include spaces such as parks. Second, one may attempt access through social institutions that support the homeless such as shelters or religious centers or through institutions that homeless may frequent such as a library. These two primary ways of access have their own set of potential issues. If a researcher chooses to access people who are homeless through a public space, there may be issues such as identifying who is homeless in a public space, increased issues of safety for everyone involved, identifying if the participants can consent due to possible substance use or cognitive issues, and limited ability to follow up. If the researcher attempts access through an institution, there may be issues of gate keeping, more levels of ethics review, and possibly a highly specific sample of homeless people reflective of the type of shelter accessed (e.g., women, families, men).

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Regarding research with people who are homeless who are accessed through institutions Schelbe et al. (2014) make an important point. Members of the institutions themselves may put in considerable time on behalf of a researcher and not be compensated. The authors pointed out examples such as “talking to youth [who are homeless] about the project, gathering parent consent forms, making available a room to conduct interviews or focus groups” (Schelbe et al., 2014, p. 511). In order to help with access and as a genuine thanks and service, researchers should consider authentic ways they can contribute to a supporting institution. Ideas forwarded in the literature include providing written reports to the institutions that may be used at staff trainings; workshops to clients, children, parents, and staff; and including questions the institution is interested in during interview, focus group, or surveys (Schelbe et al., 2014) to which we would add collaborating in participatory research with the institution. As discussed in Chapter 7, if the participants have more than one demographic variable considered to be vulnerabilities by research ethics boards, access may become even more difficult. Take, for instance, youth who are homeless. Tierney and Hallett (2009) state regarding receiving research ethics approval “No challenge has been greater than receiving permission to interview homeless youth . . . , the constraints had . . . to do with the population and how we were to reach them” (p. 20). In addition to the issues posed earlier, informed consent of teenagers typically necessitates some form of permission by the teenager’s parent or guardian. Describing this study, Tierney and Hallett estimate it took 8 months to become established in the field. First, there was the research ethics board to negotiate: “Concerns ranged from the absurd—the request to send letters to a homeless person’s home—and the tragic—when a child is on the streets or between foster homes, which adult is able to provide consent?” There were also three institutional approvals needed: a university, the national grant the researchers were part of, and the school district they planned to work with. Tierney and Hallett stated a common concern, that at times the impediments to the research, the worse he had experienced in 20 years of similar research, seemed to be more about the university covering its own liability than protecting the youth. The authors asked, “But who benefits if the project is not done and homeless youth remain invisible and impoverished? Surely, not the human subjects everyone wants to protect” (p. 20). When attempting to access youth who are homeless through their schools, Tierney and Hallett (2009) did not encounter resistance so much as ignorance, due most likely to overworked staff, few resources, and youth camouflaging their circumstances. School personnel usually expressed surprise at being identified by the district as working at a school with many homeless youth and asked the researchers to recheck their records. At one school, several hundred youth were identified, but the counselor thought it was not a good match since the counselor estimated the school probably only had about two youth who were homeless.

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Among the few shelters that refused access to the researchers, the concerns raised by shelter gatekeepers included that youth might have psychological trauma when interviewed, and interviewers would interrupt the casual nature of the shelter. In both cases youth were never given the opportunity to decide if they wanted to share their story, which is an example of well-intended paternalization (Tierney & Hallett, 2009). From the perspective of a research ethics reviewer, applications for approval may seem to be held up when the researcher pays little attention to issues addressed here. I reviewed a research ethics board application where youth thought to be homeless were to be accessed at public parks and the researcher, who was a novice, had provided no information on any important issues such as how to approach the youth, identifying youth as homeless, waiver of guardian consent, assessment of competency to understand the study, and so on. In all likelihood, the researcher would feel the research ethics board held up his or her research unduly, but with some thoughtful diligence ahead of time, all of these issues can be considered instead of uncomfortable or even hazardous experiences occurring in the field. One can quickly see through this discussion how complex access may be to hidden and hard to reach populations such as the homeless.

Compensation Versus Coercion: Can You Spare Some Change? As we have seen, access to people who are homeless can be difficult, therefore compensation may be offered to participants to help with the recruitment stage or from a more critical stance where researchers believe the researched should be compensated. Research ethics boards are concerned with what direct monetary compensation or payment in kind (PIK or PinK) research participants will receive. In this section, we briefly review the debate around participant compensation, and discuss youth participants specifically forwarding suggestions for “compensation” or benefits that may help people involved in the research setting in general. With websites named Guinea Pigs Get Paid (GPGP) and online advertisements stating, Interested in finding a paid research study on Craigslist? You are not alone. With the recent economic downturn, many people are looking in creative places to make extra money . . . the best place to find paid research studies, focus groups, clinical trials and taste tests. The people funding and running these studies need participants. (“How to Find,” n.d.) It is clear that, while researchers may wish for altruistic motives from participants, this is not always the case, nor perhaps should they be. For decades, researchers have discussed what compensation for being a research subject or participant

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might mean (Dickert & Grady, 1999). Given the brief guidance in the United States’ regulations that researchers “minimize the possibility of coercion or undue influence” (Office of Human Research Protection, 2010), there is ample room for interpretation. Researchers who discourage or are against compensation are concerned potential research participants may be encouraged to be in studies they would not be otherwise or even to take risk in a study they would not normally. Other researchers are simply concerned that all research recruitment is undermined as participants who commit to research out of a spirit of helpfulness may desire compensation (Brody, Annett, Scherer, Pertyman, & Cofrin, 2005; Diekema, 2005). For the many fields of research that use compensation as a matter of course, such as public health and medical research, conversations typically revolve around remuneration versus compensation, vulnerability, economic insecurity, and potential for using money earned as a subject or participant for risky or illegal purposes. Various compensation models to guide researchers for remuneration or PinK have been developed, explored, and advocated for. Primary models include (1) compensation in the form of remuneration calculated at the minimal wage of an unskilled laborer; (2) reimbursement of expenses (food, travel, etc.); (3) risk model (the higher the risk for the participant the higher the compensation) (Dickert & Grady, 1999). Speaking of youth in general, Schelbe et al. (2014) found little discussion of compensation and coercion in research. “One challenge of compensation for children is that an amount of financial compensation that may not be a significant incentive with adults, may border on coercion with children and youth” (p. 517). Researchers will of course wish to carefully consider cognitive development differences and power imbalances (see Chapter 5 for an in-depth discussion of this issue). Researchers have found adolescents’ parents assessed risk as higher than their children and the adolescents were willing to be in medical research that held some risk without compensation. The researchers thought this might indicate that compensation is not an undue inducement to the youth (Wiener, Viola, Wilfond, Wendler, & Grady, 2014), however it may also demonstrate a lack of understanding of risk and compensation as related to research that may vary greatly among children and youth. This is illustrated anecdotally by a prized knight mini Lego figure Maria’s son proudly bore home after gaining it in a Tom Sawyer-like swap for a mini pretzel stick (which Maria had returned to the child owner the following day). Researchers have also tried different methods of when to give compensation. Two researchers in Schelbe et al. (2014), studying youth who were supported by welfare or in domestic violence shelters, gave gift cards as soon as the consent/ assent forms were signed so participants would know they did not need to continue the study in order to receive compensation. Some youth joked about leaving the study before the interview, but no one did. Tierney and Hallett (2009) did not always tell youth who were homeless they would receive a gift card until the study was over. This way the compensation was more of a thank-you and not a research incentive.

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Compensation is a fascinating and important area of methodological discussion yielding little agreement. When applying compensation to research with groups deemed vulnerable and, in particular, economically vulnerable, the discussion becomes even more complex. Here we consider people who are homeless specifically. IRB boards may use the federal guidelines to develop more strict guidelines for their researchers. For instance, one board says, “Homeless subjects are vulnerable to coercion, especially if the research team offers compensation for participation. It is recommended compensation not be offered to reduce the likelihood of coercion” (Virginia Tech, n.d.). Tyler, the author of this chapter who has been homeless, firmly countered this guideline, stating, “That is no different than saying, ‘don’t give spare change.’” Readers can see there is much room for thought, discussion, and culturally responsive action in this area. It is important to note that, while none of us have offered remuneration or compensation in research, this decision was in part due to not having access to grant monies. We feel compensation of some sort is not beyond consideration. By being homeless, one does not warrant a no compensation recommendation. In a study referenced earlier, Tirney (2014) compensated youth, who were homeless, 15 dollars an hour for an interview saying this was close to minimum wage and in some cases gave gift cards to a grocery store. With some creative strategizing, a gift to the shelter or school district allowing access to the researchers may be appropriate. Researchers may wish to offer childcare for an afternoon or night out for parents at shelters that require the parents to be with the children at all times; other research groups may consider offering lunch during an interview, tutoring programs, college information, a free afternoon of washing laundry in a laundromat as in-depth interviews are conducted, or informational sessions based on the research data collected. Tirney helped a homeless youth’s mom understand how to access school even though she did not have the appropriate school records and to obtain a school uniform voucher and transportation. Trent: If I saw the bright colored, floral skirt at another time in another situation, I might not have thought twice about it. Yet the bright colors amid layers of dark jackets (some big, some small), black plastic bags, water-soaked cardboard, and a filled metal cart caught my eye. Actually, I couldn’t look away. The woman sleeping on the cold concrete lining the Sears’ entryway was impervious to the stream of cars just ten feet away splashing the fallen rain closer and closer to her bed. . . . I am at the gas station filling my relatively new car with gas, getting set for my day’s work. I see a woman heading my way, clothes dirty and too big for her, hiding what womanly figure she has. I turn away as do the other men pumping gas. I feel her eyes on me and know what is next, “Do you have some spare change?” I replied with my now typical, “Sorry, I don’t have any cash.” As she walked past the men and across the street, I immediately felt guilty and inhuman. Is this God testing me? Could I not give this person a couple of quarters? I found a dollar in my car and drove over to her. “Ma’am.” She turned and walked toward the car. I handed her a dollar. “Bless you.” Somehow, I feel better.

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Culturally Responsive Relational Reflexive Ethics In this section, we consider ways in which researchers could potentially adopt Culturally Responsive Relational Reflexive Ethics (CRRRE) as an ethical frame for one’s research practices. Culturally responsive researchers are flexible and attempt to have research designs that are dynamic to be responsive to potential needs of participants that are almost always not fully understandable at the outset of a study. Relational researchers hold the human relationship in research as sacred over any outcomes that privilege the researcher, such as an article or vita line. Reflexive researchers continuously review the research process in an effort to enhance their ability to fulfill the preceding, and have the humility to know that as a fallible human this will not be fully possible, mistakes will be made, messes encountered, and the learning that occurs is one of the most vital aspects of the research encounter. At the outset of a study with the homeless, researchers are encouraged to reflect by journaling and discussing with colleagues and co-researchers verbally or through email attitudes and beliefs about homes, houses, the housed, and unhoused. In relationally oriented research, and research in general, research ethics are arguably a primary issue. Research of the highest caliber may be unusable if viewed as unethical. Therefore, it is vital to examine ethical issues with potentially vulnerable populations (e.g., those who are homeless). Transparency in research enhances researchers’ ability to conduct ethical research. Finally, we advocate for an increase in methodological publications of this nature. As we are Becoming ethically it is through the transparency of the back stories of research—or what deMarrais (1998) has called inside stories in her eponymous book and mucking around (p. xi), or what Moch and Gates (1999) termed researcher experience—that researchers may relate reflexively with the larger community of researchers. In this way, we can surmount the methodological isolation that occurs when we feel compelled to present research as seamless, unified results with little to none of the humanness that is at the core of all we do. “Well, friendly always goes a long way in these situations. I’d like to reach out to them and make them feel at home, the new guys, because it’s scary here. When we first walk in the door it’s like okay, what am I dealing with here? Am I dealing with murderers, drunk drivers? What am I dealing with, people that steal my stuff? So I try to make them feel welcome.” —Stud, a research participant who is homeless

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Reflexive Questions Home/House Experiences   1. How have your experiences with being housed impacted your sense of personal safety?   2. How has your sense of home impacted your sense of safety?   3. How have these experiences impacted your sense of belonging?   4. What constitutes family?   5. What do you think typically occurs in a home?   6. What occurred/occurs in your home?   7. What does stability mean to you?   8. How might one try to negotiate power/privilege differences in this area of research?   9. What is the potential impact of stereotypes in research? 10. What are your discipline oriented biases/assumptions about home and houses? 11. What topics in these areas might you need to consider carefully due to your personal experience?

Homeless 12. What have been or are your experiences with people who are homeless? 13. What does your dominant culture believe about people who are homeless? 14. What did your family teach you about people who were homeless? 15. What do you now believe about people who are homeless? 16. How might you best go about informing yourself about people who are homeless?

Ethical Considerations in Research 17. What are the major areas of ethical concern you have when designing or conducting research with people who are homeless? 18. How might you gain access respectfully to these participants? 19. What safety issues might you have to consider for yourself and for the participants who are homeless? 20. Considering the many perspectives on compensation in research for people who are homeless, where do you stand on this issue?

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Reflexive Course Experiences See Appendix F for details on the following course experiences that complement this chapter. History Alive; Ripped from the Headlines; Words Matter; Debate or FlipFlop-Debate; Speed Discussion; Doodle IT; Word Clouds; Interview a Researcher. A research ethics issue to debate could be the following: Should there be compensation of participants who are homeless and if so, how should it occur? A course experience could include finding a way to ask homeless people what their opinion is on compensation for research.

Resources Articles Cloke, P., Cooke, P., Cursons, J., Milbourne, P., & Widdowfield, R. (2000). Ethics, reflexivity and research: Encounters with homeless people. Ethics, Place & Environment, 3(2), 133–154. Meade, M. A., & Slesnick, N. (2002). Ethical considerations for research and treatment with runaway and homeless adolescents. The Journal of Psychology, 136(4), 449–463.

Books Valado, T., & Amster, R. (2012). Professional lives, personal struggles: Ethics and advocacy in research on homelessness. Lanham, MD: Lexington Books.

Internet Resources http://homeless.samhsa.gov/About.aspx National Health Care for the Homeless Council https://www.nhchc.org

The Homeless Hub According to their website, “The Homeless Hub is a web-based research library and information centre representing an innovative step forward in the use of technology to enhance knowledge mobilization and networking. Building on the success of the Canadian Conference on Homelessness (2005), the Homeless Hub was created to

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address the need for a single place to find homelessness information from across Canada. This project began with an understanding that different stakeholders (in government, academia and the social services sector) are likely to think about and utilize research in different ways. As such, the website was built with different stakeholders in mind.” http://homelesshub.ca/research/ethics

9 VISUAL AND VIRTUAL ETHICAL RESEARCH Captured Forever Maria K. E. Lahman and Cindy Kronauge What you have caught on film is captured forever . . . it remembers little things, long after you have forgotten everything. —Aaron Siskind

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isual research (Banks, 2001), auto-driven photo-elicitation (Samuels, 2004), autodriving (Heisley & Levy, 1991), collage inquiry (Butler-Kisber & Poldma, 2010), mosaic approach (Clark, 2004), photo research, photobiography (Liamputtong, 2007), photo ethnography (Harper, 2005), photo feedback (Oliffe & Bottorff, 2007; Sampson-Cordle, 2001), photo interviewing (Hurworth, 2003; Oliffe & Bottorff, 2007), photonovella (Wang & Burris, 1994) PhotoVoice (Wang & Burris, 1994, 1997), reflexive photography (Douglas, 1998; Liamputtong, 2007), visual anthropology (Harper, 1994), visual ethnography, visual sociology (Harper, 2005). Virtual research, computer mediated research, cyber ethnography, cyber research, Internet research, Internet mediated research, online research, netnography (Kozinets, 2002), virtual ethnography (Hine, 2000). Visual1 and virtual research ethics entail cutting-edge areas of human research where basic ethical issues are still being thought through. This might be primarily due to trying to understand what it means to capture a human image perhaps forever and dynamic advances in technology. Both research areas represent vast  My coauthor, Cindy, contributed extensively to the visual portions of this chapter.

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arenas of their own as signified by the list of methodological terms that I opened the chapter with, but have an important crossover in the use of participants’ images and technology as a subarea of research. These cutting-edge areas have been written about, and the literature is currently beginning to burgeon (e.g., Banks & Zeitlyn, 2015; Harper, 1994, 1998, 2005; Markham & Buchanan, 2012). For the purpose of this chapter, I have combined the discussion of visual and virtual research ethics due to important similarities such as the highly sensitive nature of capturing a research participant’s image, perceived privacy or not of people’s actions (be it in person or on the Internet), and the technology-driven, ever-changing nature of these areas of research (e.g., future technologies). I chose visual and virtual research for an exemplar ethics chapter since researchers are rapidly embracing technology as a way to mediate research and the Internet as a viable culture in need of exploration. Therefore, it is advisable, as a researchers who should always strive to be becoming, to explore the ethical issues these areas may present. Toward this end, in this chapter I, working with Cindy in the area of visuals briefly review the fields of research, the Internet as a culture, and our research experiences. We then advance ethical considerations in the areas of visual research regarding difficulty in receiving research board approval and relatedly issues in confidentiality. I consider ethical issues in virtual research including considering if virtual and real time ethical issues are uniquely distinct areas or similar, when is virtual research with humans, public space versus private, data security, and cultural responsivity. Throughout, I insert narrative apercus from personal experiences, and textboxes with researcher’s ethical dilemmas in these areas. Maria: I am Mennonite, which is one of the historical peace groups. While I did not personally grow up in a highly conservative group, my father was from a group of Mennonites that did not allow photography. Photography was seen as a graven image, as in the commandment—Thou shall not make any graven images. Ironically, groups such as traditional Mennonites and Amish who do not use photography are highly photographed by outsiders who Other them by romanticizing their culture as quaint and pictorial. I can recall being at an extended family reunion when I was a girl where the entire group, other than my immediate family, was conservative Mennonite. One of my oldest cousins covertly showed us a picture of her baby. I pieced together that we were trying not to let an uncle, who was vocally outspoken against actions that went against the church, know they had taken pictures. Given that my family was the most liberal of this group by far, photography was a part of my regular life, and my father even had enough experience in photography that he used a dark room to develop his own photos. More recently my family has been asked by young conservative Mennonites who were joining the church how to take down their Facebook page and to privately order items for them from the Internet.

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These kinds of interactions around images made an impact on me. While the interpretation of a photo as a graven image may make little sense to people outside of these groups, I can see the desire to take photos interrupts life events to the extent people, myself included, will stop important events and awkwardly hold them at bay until a working camera is located. If a graven image is considered an image more important than God or the most important belief a person holds, we may see a hint here at what my conservative family is concerned about. Many, including myself, would say photos are their most precious items in a home. People increasingly seem, to me, to be overly preoccupied with images to the extent their life does not always seem to be focused on real-time interactions occurring around them. Also, someone who has your image, in a sense, has power over you or has a part of you. These are all reflections I rarely share since I think my contemporaries would find them to be extreme, but I am sure they are the source of my reluctance to be a member on sites such as Facebook and why I limit Internet interactions to primarily professional.

VISUAL RESEARCH Photography takes an instant out of time, altering life by holding it still. —Dorothea Lange Visual research spans a vast historical realm of research (e.g., Collier, 1957, 1967, 2001) including areas that may not use participants’ images at all (e.g., mapping, art inquiry, collage). These areas will not be part of this discussion; instead, we will focus primarily on photographing participants’ images and/or participants photographing their lives. Banks (1995) has observed that for much of the history of visual research, there were two primary research areas: (a) use of participants’ existing visuals and (b) use of visuals the researchers produced. Importantly, Banks noted the more recent addition of (c) collaborative visual research, where researcher and participants produce visuals together (e.g., PhotoVoice). This addition is no doubt a result of increasingly empowering and emancipatory methodological attempts by contemporary critical researchers. The use of photography as methodology may be understood from the saying a picture is worth a thousand words. Eisner (2001) has stated, “Not everything . . . can be expressed in words. Some things, for example, can be expressed through visual images” (p. 190). Using photography allows the researcher to explore participants’ visual understandings and provides a multifaceted perspective. Visual methodologies comprise many areas including visual elicitation, visual sociology, visual ethnography, photo methodology, and the use of artifacts, moving images, and still images found in archives or produced by the researcher or researched (Harper, 1994). Photo methodology has a long history in fields such as anthropology, history, and oral history. However, acceptance of photo methodologies has only recently begun to be widespread.

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As the field of photo methodology matured, the idea of what a photo is also changed. Originally a photo was seen as a fact or a document that captured a visual piece of reality (Harper, 1994; Holm, 2008). This idea was problematized as people began to see photos as a moment in time that represented just one of many possible perspectives or realities. “Images are not neutral and do not portray a truth but only the producers’ and viewers co-constructed understanding” (Holm, 2008, p. 325). Photos can also be contrived and manipulated, and they do not allow the viewer to see the photographer, the full setting, or all aspects of the photographed. For example, we cannot see the back of a person in a traditional portrait or we might not be able to see the bottom half of the person. As issues of perspective, interpretation, and representation came into play, photo methodology took on a decidedly postmodern flavor. As photography equipment became more affordable and accessible, photos became ubiquitous (Gibbs, Friese, & Mangabeira, 2002), impacting visual research with three significant developments. First, photo research methodologies became more prevalent. “Ever improving photo technology facilitates researchers’ use of visual devices in the study of a wide range of subjects” (Johnson & Weller, 2002, p. 511). Second, photo methodologies also took on a critical perspective—the idea that the researcher would not be the only one taking photos. Now researchers could put cameras in the hands of participants and see through their lens. Third, research participants were accustomed to being photographed in their daily life and often knew how to take photos themselves, thus increasing their comfort level with being photographed as part of research (Gibbs et al., 2002). Cameras and video recorders began to take on many forms: mobile phones (Choi, Stotlar, & Park, 2006); digital, disposable, single-use cameras (Allen, 2010); and web cameras (Holm, 2008).

BOX 9.1.  RESEARCH ETHICS VIGNETTE Krista Griffin It seems we are rarely directly taught how much research is driven by access to money. The PhotoVoice (Wang & Burris, 1994, 1997) research I conducted with children exploring reading identity is an example of this limitation to research. PhotoVoice research is a critical method intended to empower the participants by putting the control of the camera in their hands. Initially, the students and I met to go over the study, pass out single use cameras, provide instruction in camera use, and have group discussion to explore constructs like text and identity. Students were asked to brainstorm general questions as a group such as “What do you include in your definition of text?” and “How might you capture on film your reading identity?” Students kept the cameras over a week-long break. Five students returned them on Monday and two students brought replacement cameras in on Tuesday as both of their younger siblings had used up all the film.

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© iStockphoto.com/ BehindTheLens

It was difficult to find a way to develop regular film; when I finally did, I was shocked to discover the cost. The development took 3 days as opposed to the onehour instant development I was used to. The clerk said they would probably be phasing out their film developing equipment. I followed the PhotoVoice protocol for the photo analysis, meeting with each student individually, adapting the questions somewhat to fit the age group and the study. Each student picked four pictures that best represented his or her reading identity. Most took 24 pictures with all having ones that were not usable due to photo errors, and one girl only had two pictures develop properly. In her case, we discussed the two photos, and I then I asked her to describe two other pictures she remembered taking. For each picture, I asked the following four questions: What do you see in this picture? What is happening in this picture? How does this relate to how you see yourself as a reader? Why do you see yourself this way? After they had discussed all four pictures, I asked, “How can these pictures help your teacher know about you as a reader?” I was dismayed by the cost and time it took to carry out this project. As a money-strapped graduate student, this was an important detail. The single use cameras were $50 for the initial purchase of eight, not counting the two the families replaced. What if the families were unable or unwilling to replace the cameras? The photo developing cost was over $60. How does one work to alleviate the cost of photo research? If I were to conduct this research again, I would consider using lower end digital cameras (see Box 9.2 by Quaylan Allen for a research experience with digital cameras). However, the initial cost would be a deterrent as would the loss of a digital camera. If students today were asked to supply their own digital camera many more could participate than in the recent past, but important groups might still be left out. A colleague asked other researchers to donate digital cameras they no longer used. The request produced far more A child uses a camera, similarly to children in cameras than anticipated, but the variety of cameras and ways of Krista’s study featured here. saving and printing were daunting to supervise. What are the ethical implications of those who have money and resources having ready access to conducting human research?

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Today, while photo methodologies may be seen in many disciplines, they are integrated into multifaceted research designs or as sole methods of data collection, and are increasingly represented in journal publications (Harper, 2005); photo methodology is still typically classified under emergent, alternative, or innovative methods (Liamputtong, 2007), signifying its relative new status in traditional fields and with traditional researchers. See Boxes 9.1 and 9.2 for discussion of visual technologies changes and impact on research.

VIRTUAL RESEARCH “Social media is changing the way we communicate and the way we are perceived, both positively and negatively. Every time you post a photo, or update your status, you are contributing to your own digital foot print and personal brand.” —Amy Jo Martin If visual research is seen by some as still emergent, then virtual research (online or Internet) is in its infancy; however, of late, literature on virtual research ethics has developed considerably (Markham & Buchanan, 2012). Online or Internet research may be broadly considered to be research conducted via the Internet or about Internet communities or spaces specifically. The distinction here is in the former—researchers use the Internet as a tool to collect data (e.g., SKYPE interviews, email surveys, Google Hangout focus groups) while in the latter, the researcher is focused on the Internet as a community space or culture. Types of methodologies readers may be familiar with include cyber-ethnography, virtual ethnography, and online ethnography (Markham & Buchanan, 2016).

INTERNET AS A CULTURE “The Internet is becoming the town square for the global village of tomorrow.” —Bill Gates Historically, ethnographers have observed cultures where people were all located at one site. Online research extends the idea of a culture to Internet mediated interactions with people being located in multiple and possibly distant places. Some ethnographers examine both offline and online interactions of the participants (Gatson & Zweerink, 2004; Sade-Beck, 2004). I still recall early in my career being soundly told by an anthropologist the Internet could not be considered a culture. While this perspective may have existed at the beginning of Internet research, perhaps due to the way some people have created different identities

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online, it is not a perspective I can currently identify in the research literature. Instead ethnographers have taken active roles in developing cyber-ethnography and its related methodologies, examining the cultures created through Internet communication. An important aspect of Internet culture is much of it is based on text and images and not on real-time interactions, although these are increasingly available with Internet technologies.

OUR RESEARCH AREAS I have conducted virtual research with postings from an inactive Internet site. Women shared their ectopic pregnancy experiences, asked questions, and provided each other support (Lahman, 2013). I also utilized the Internet and photography as a secondary data collection method in several studies and have supervised multiple visual and virtual studies (e.g., Larkins, 2015; Richard & Lahman, 2015). As an IRB co-chair and research supervisor, the amount of virtual research I have supervised has increased considerably over the last decade with much of it being implemented by well-intending researchers with seemingly little methodological or ethical considerations. Cindy conducted an in-depth review of photo methodologies and a Photovoice study (Wang & Burris, 1997) with youth in the area of community health that I was the consultant for.

BOX 9.2.  RESEARCH ETHICS VIGNETTE Quaylan Allen In a visual ethnography I conducted (Allen, 2012), Black male students were provided digital cameras and given prompts to shoot images of their social world. I asked, “If I were to hang out with you over the next few weeks, what would we see, who would we see, where would we go, and what would we do?” This allowed the students to represent their lives through photographs in a manner that privileged the insider voice. As a college educated, middle-class Black male, my identities positioned me as an insider/outsider. As an insider, I grew up in the location of the study, was a selfproclaimed aficionado of Hip-Hop culture familiar with the youth vernacular in the region. However, this status was at odds with my age, education, and position as a researcher. I was still the “old guy,” in my upper 20s, from out of town, who was doing research. Abu-Lughod (1990, 1991) identified this position as a “halfie,” where the researcher is marginalized and part of a culture at the same time. Low-cost cameras have increased the viability of participant photography as participants are more likely to be familiar with the technology (Packard, 2008). (Continued)

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(Continued)

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However, this assumes participants will find cost-efficient versions (e.g., disposable cameras) appealing enough to use. In preparation for the research I describe, I conducted a pilot study where I distributed disposable cameras to Black and Latino(a) male and female high school students. The girls returned the cameras, using the entire roll of film. None of the boys completed the research because they viewed the disposable cameras as not “cool enough.” They were embarrassed to display the camera in front of their peers because they felt it sent the message they could not afford a better one. As a result, I decided to provide moderately priced ($100 each) digital cameras for the current research study. I initially struggled to find participants. However, the few participants enrolled into the study were seen shooting photos around campus (meaning people could “see” what kind of camera it was), and the number of volunteers for the study increased from four to 20 within a week’s period. Wang and Burris (1997) pointed out that “cameras are an unusually motivating and appealing tool for most people” (p. 372) but I would argue the “right” cameras could be motivating and appealing tools for young Black males. In this participant photography with Black males, the digital cameras were seen as “cool” enough to affirm their masculine performances, warranting youth cultural acceptance. The overall cost of conducting a visual project is something researchers should consider when adopting photo-based research. In this study, because I wanted

The image is a stock photo2 used to represent an image from Allen’s research with Black male high school students. The image was taken in response to the question, “If I were to hang out with you what would I see?”

It is worth noting for visual researchers why all the images in this chapter are stock images. The images were from various studies that were not originally intended for a book. First, most images were not at a high enough resolution for a book. Second, all were by amateurs, which is usually the case in research, and were grainy or out of focus and would not feature well in a book. Third, some had items in the image that are copy righted. Fourth, and importantly, some had images of people that we did not have permission from for a book publication. Therefore, in all cases I worked as closely as I could with the researchers to find alternative images that were similar in nature, but the stock photos certainly have a much more professional look than the participants’ photos would have.

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students to have their own cameras, while also accounting for what kind of cameras would be culturally acceptable, the visual portion of the project was costly. As a researcher working with youth populations and their families in a visual project, it’s important to create a working relationship in which participants are comfortable and trusting of the researcher. Therefore, how much do you hold the participants financially accountable for the use of the technology while ensuring that you don’t “turn off” participants from volunteering? Ultimately, I chose to release the students from any formal liability because I felt this would deter students and their families from participating. Of the 10 digital cameras given out to student participants, 9 cameras came back. The missing camera was loaned out to a cousin who lost it. The mother of the participant, despite being on government assistance, volunteered to repay the cost of the camera. I debated whether to accept payment considering who would be hurt more by the loss—myself or a working-class, unemployed single parent. I ultimately accepted her offer—I felt not accepting her repayment would cause the most damage to our relationship as the mother made it clear she would be offended if I did not allow her to “right a wrong” (see Allen [2012] for more detail on this research experience).

ETHICAL CONSIDERATIONS In this section of the chapter, I present a discussion of some of the ethical issues in visual and virtual research. In the area of visual research, Cindy and I discuss the difficulty in receiving research board approval and relatedly issues in confidentiality, which are a main concern for research ethics boards. Virtual research has an instructive area of thought as to if virtual and real-time research have unique ethical issues or fundamentally the same issues. Ethical considerations include: determining when research is with humans, public space versus private, data security, and cultural responsivity in virtual research.

Visual Research Considerations “There is only you and your camera. The limitations in your photography are in yourself, for what we see is what we are.” —Ernst Haas In the area of photo methodologies, there is a dearth in ethics literature (Harper, 2005). Harper stated, “The practical implications are that one will sometimes find oneself in research situations where photography would violate the norms of the setting or the feelings of the subjects; in such cases, photography should not be done” (p. 760). Gold (1989) recommended photo researchers use their personal

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ethical code as a guide in these nuanced situations. Both Harper’s and Gold’s recommendations point to cultural responsivity. What literature exists has some helpful ethical guidelines. Wang and Redwood-Jones (cited by Allen, 2010) highlighted ethical areas to consider, for example, individuals’ right to privacy in public spaces and legally photographing someone may not be ethical. In participatory research, participants should retain rights to photographs they take and be encouraged to consider repercussions of photos they take in the contexts they are embedded. Two major and related concerns occurred in Cindy’s PhotoVoice study with youth: (1) the research ethics board review and (2) identity of human images. Cindy’s experiences with the research ethics board review were painstaking; at times, alterations were requested by review board members that would compromise the research design such as no photos of minors or any humans, potentially silencing already marginalized participants. The research ethics boards concerns were, and rightly so, always focused on protecting human identity. However, there either wasn’t much understanding about all the nuances involved or little appreciation for when humans want their images displayed. So, for example, a research ethics board should consider when the photos are being taken in public or of public figures, if the people being photographed have indicated it is fine with them to be photographed, and the variety of ways a researcher can either creatively take the photo (e.g., the ballet shoes photograph) or alter the human image digitally so it is difficult to identify someone. In the area of identity, PhotoVoice specifically has several concerns. PhotoVoice researchers’ critical action-orientation identifies the photographers (participants) who become a vehicle for action in their community. The photographer might also be potentially vulnerable in some manner, for example, the youth in Cindy,

In a study I, Maria, conducted with young children I did not have permission to use human images. Each child was given a digital camera at some point in the study and asked to take five photos of something in their classroom that was important to them. I explained that unfortunately they could not take pictures of their friends. With no adult influence the children indicated repeatedly their resourcefulness and the importance of friendship by taking photos of items that belonged to their friends such as cubby labels, name tags, backpacks, and toys. The stock photo featured here shows an example of name tags since these identify names in the actual research photos.

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© iStockphoto.com/ AnitaVDB

This image is a stock image representing a photo a participant in Cindy’s study took. The caption the real students created said: My Feet and Decisions. Dancing is my oasis from this crazy world we live in. I do Mexican folk dancing and ballet. Right now I’ve reached a hard point because I have to choose which one I want to focus on. Many teens have to choose what is right for them right now, and it is a tough choice.

Krista, and Quaylan’s studies, persons living with HIV/AIDS (Mitchell, DeLange, Moletsane, Stuart, & Buthelezi, 2005), persons who are homeless (Rhodes, Hergenrather, Wilkin, & Jolly, 2008), or formerly incarcerated youth (Shannon, 2010). Potential vulnerability creates additional ethical concerns in the area of anonymity and confidentiality. Another related ethical concern is that of the photo subject matter. In Cindy’s study, health issues were of interest. What would happen if photos were taken of socially unacceptable or dangerous behavior such as anorexia or illicit acts such as drug use? Specific photos of concern in this study included youth who were seemingly suffering from depression. What is the photographer’s and researcher’s responsibility in these situations? These issues are compounded when working with youth as we will discuss in the next section.

Virtual Research Ethics Internet research ethics are dynamic, not static, as indeed are all ethics. However, the Internet in particular is a case where time and information exchange seem to move more quickly. The scope and contexts of internet research have been dramatically expanded through the continuing global diffusion of the internet into nearly every country in the world, as facilitated through a growing array of devices (including

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game consoles, internetenabled phones and other mobile devices) and ever-increasing bandwidth; rapidly expanding suites of new communication applications; and the increasingly seamless interweaving of online and offline activities and experiences. (Markham & Buchanan, 2012) Due to this constant change, research ethics boards may not always be equipped with the members and resources needed to grasp the ethical situations possible in Internet research. Most likely it is not possible to have research ethics board members who understand all aspects of virtual research; I, A stock photo of a water fountain is used to represent a Maria, certainly do not. At the student’s photography of a water fountain at his school. university I am affiliated with, This photography was part of the PhotoVoice study Cindy the research ethics board colconducted. The words, “enjoy the lead,” were written on the fountain he photographed. He wrote a caption for the laborated with information photo stating: technology (IT) colleagues and Lead Pipes have made the process of virtual research review more rigorI was rather shocked when I heard a school announcement that we should make sure to run the water ous, quick, and transparent. A fountains for at least 30 seconds in the morning because group was convened of human there is lead in the pipes. During the 3 years I spent in research experts, IT security middle school in this building I never heard a single thing about lead. experts, and interested members to develop a process and It doesn’t make sense that anyone should consume even the smallest amounts of lead when they know it can be a form researchers submit indiavoided. Lead should not be allowed to remain in the cating the level of data security water pipes of old buildings, even if it is costly to get rid of, concerns they believe their because we don’t come to school to get brain damage. work might have. A member from IT who is a security expert attends research ethics board meetings and consults on a case-by-case basis. This is just one of many ways researchers are trying to bring ethical transparency and security to virtual research.

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In the area of Internet research ethics, there is debate as to whether research ethics should be different in substance than “real-world ethics” (Markham & Buchanan, 2012). Holge-Hazelton (2002) writes, Since ethics is a matter of human relations/interactions, it seems to me that the “Questions of ethics” in research on the Internet depends on whether the interaction via the Internet creates new forms of human relationships that demand new ways of acting ethically . . . if research in cyberspace is regarded as something new and special, new ethical guidelines should be constructed for its use. If cyberspace is regarded as an extension of existing interaction . . . it should be possible to extend the current ethical practice to virtual space. (p. 34) Holge-Hazelton (2002) goes on to reference Gotved’s thoughts (2000): Cyberspace is closely connected to the space of everyday life, and even though the means of expression vary over a broad spectrum, they can at the same time be captured by more or less the same ethical guidelines. Not that we shouldn’t relate to the special, but on the contrary, that the nature of the special derives from and is defined in relation to the well known. (p. 12) Other researchers have critiqued applied ethics in the area of virtual research ethics as having little reference to technology—a sort of “technological blindness” (Keulartz, Schermer, Korthals, & Swierstra, 2004). Researchers have pointed out that due to the relative newness of Internet research (some 20 years old), formal ethics discussions are still in an early stage of development (Madge, 2007) with major codes such as the U.S. Common Rule for IRBs having little to no reference on how to conduct research ethically on the Internet (Markham & Buchanan, 2012). Also, since research is driven by access to monies that support its implementation, there is concern Internet research has a “glowing attractiveness” since it may be cheap and quick (Madge, 2007). Given the newness and constant development of virtual technology, the idea of culturally responsive visual and virtual ethics is an area that has been given little formalized thought in relation to other fields. In the following sections, I consider what constitutes a human subject, public vs. private space, data security, and what cultural responsivity might mean in Internet research.

What Is a Human Subject? Historically, in human research, it has been relatively clear if a researcher is working directly with a human, or archival human data, or a non-human. However, as Markham and Buchanan (2012) pointed out, “The Internet

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complicates the fundamental research ethics question of personhood. Is an avatar a person? Is one’s digital information an extension of the self?” It seems clear if a researcher is using the Internet as a tool with which to contact humans and collect data (e.g., SKYPE interviews, chats, email), they are definitely conducting human research. However, the more dated and remote the connection between the originator of the Internet information and said information becomes, the more indistinct it seems whether the research is, in fact, human research. If an Internet dataset is massive as in “big data” (e.g., blogging behavior, sports tweets), do we feel safe the person is anonymous to the extent they are not identifiable? If we do not, how does one meaningfully gain consent? Research of Facebook sites has demonstrated that people are most likely identifiable in these seemingly unidentifiable datasets (see Zimmer [2010] for an extensive discussion of this common misunderstanding). We should always remind ourselves every data point originates with a human somewhere (Markham & Buchanan, 2012). We can quickly see the complexity virtual spaces add to research.

What Is Public, and What Is Private? “People have really gotten comfortable not only sharing more information and different kinds, but more openly and with more people—and that social norm is just something that has evolved over time.” —Mark Zuckerberg What is public or private behavior is an issue for both visual (Allen, 2012) and virtual researchers (Markham & Buchanan, 2012). Allen (2012) writing about photo research of public behavior reminds us private behavior occurs in public spaces. In many research codes researchers may observe people’s public behavior without consent as long as the people would have a reasonable expectation they might be observed (e.g., U.S. Common Rule and British Psychological Society). This distinction of public space, private space, and momentarily private behavior in a public space becomes more blurred when one moves to an Internet context. For example, much of Internet behavior is both private (person in their home residence) and public (person is active in the Internet) simultaneously. Paechter (2012) described this as people treating the Internet as at “least partially private spaces, despite their public accessibility” (p. 79). Hutchinson (cited by Hookway, 2008) pointed out there seem to be three main concepts of online privacy: (a) archived material is public and participant consent is not necessary; (b) since online writers expect privacy, they should be accorded privacy; and (c) online defies a clear-cut definition of privacy. Researchers who believe point (c) would do well to advocate Markham and Buchanan’s (2012) position of considering online research ethics case by case. The multiple simultaneous contexts the Internet provides has been described as shifting terrains (Markham & Buchanan, 2012). As Internet search tools have

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become more sophisticated, data may become public at a level the originator did not intend or conceive of (Zimmer, 2010). AoIR, one of the few human research ethics codes that directly address the Internet, states, Individual and cultural definitions and expectations of privacy are ambigu­ ous, contested, and changing. People may operate in public spaces but maintain strong perceptions or expectations of privacy. Or, they may acknowledge that the substance of their communication is public, but that the specific context in which it appears implies restrictions on how that information is—or ought to be—used by other parties. (Markham & Buchanan, 2012, p. 6) Researchers have found privacy concerns may not be high for participants (see Randy Larkins’s research in Box 9.3). Holge-Hazelton (2002) conducted sensitive research with youth who have diabetes and “found the absence of the body and the possibility of anonymity in cyberspace was often short lived” (p. 11) with participants providing personal details and even pictures of themselves. Clearly private and public are no longer obviously delineated spaces. Researchers will also want to be aware of current copyright laws since, depending on the country the originator is from, some work on the Internet is automatically copyrighted. These copyrights may have provisions for research use. Also, there is little guidance on when a researcher should credit an Internet member or keep his or her name anonymous (Hookway, 2008). Asking the person who has put data on the Internet may be the only way to decide since it is hard to distinguish at times between private postings and public products.

BOX 9.3.  RESEARCH ETHICS VIGNETTE Randy Larkins I conducted focus group research with college students on their perceptions of department and university support for courses with a high percentage of failing grades. Focus group options included traditional face-to-face, texting, and virtual computer mediated. I had thought ethical considerations and privacy might be important as to the type of focus group a student would choose (Larkins, 2015). For instance, students who do not like to talk in actual or electronic faceto-face groups might prefer text-only sessions, and therefore I would be able to be more culturally responsive by adding these participants. I found this was not the case; no one stated choosing their group was due to this issue. Convenience as to time or location seemed to be more important than privacy issues to participants of all groups. (Continued)

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(Continued) As part of the research, I also asked students’ consent to view their grades in this class. I assured them their grades would to be kept confidential. I asked questions of the entire class concerning grades—what grade did they think students in this class were receiving? Despite my repeatedly stating they did not need to state personal academic information in terms of how well they were doing in the course, participants freely shared the information regardless. It became my responsibility to protect the student by steering the conversation to the general in the class and away from specific academic performance. As Trevor (an audio–video participant) put it, “I think . . . privacy—I mean, out of my group of friends, I can’t speak for everyone, but I don’t think privacy with the webcam makes much of an issue. Just because we grew up with it, we’re kind of used to it.” No person considered privacy to be an issue in their choice of focus group. The main reason they chose the type of focus group was whether or not they felt they could share everything they wanted to share. The idea they could use aliases and be completely private in the text-only group was also not an issue with anyone regarding choice of group. Ultimately, I came to realize privacy and confidentiality were not only nonissues for the participants, but participants were willing to share more than I had asked. It then became my responsibility to protect them from sharing grades and performance in the class. Future researchers should consider participants’ human rights even more carefully if it is apparent the participants are not taking issues of privacy and confidentiality seriously.

Data Security Data security is always ongoing and changing. As researchers are able to take increasingly complex human data samples (e.g., voice recordings, image recordings), considerations of what future technologies might allow people to do with these data should be of concern. I will cover just a few areas for considerations as examples: anonymization/de-identification, data proliferation, and future technologies. A main way of securing data is anonymizing them. This is a standard practice for researchers whereby pseudonyms are chosen for people and places. With indepth relational work, it may be that even with the use of pseudonyms, the participants and settings are identifiable. In these cases, researchers may need to remove highly descriptive details and personal demographics. It may also be a conversation with the participants reveals they are comfortable with being identified or wish to be identified (see Chapter 4 for a discussion of participants who wish to be named). When a researcher does need to remove detail to enhance confidentiality tension remains between losing the richness of the data and important details, or keeping the data confidential. The ease of data proliferation (e.g., one copy of data becomes many) is an aspect of data security that is concerning. Technology has allowed researchers to

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quickly make copies of data, seemingly anonymize data, and lock it on a device. In an excellent article, Aldridge, Medina, and Ralphs (2010) demonstrated how one digitally recorded interview might be copied many times, albeit on password protected devices. Describing this as “the journey of one interview,” the authors showed how the interview might end up being copied many times all for reasons which in and of their own are justifiable. The authors had a challenging experience when a laptop containing highly sensitive research data was stolen. They in turn used this experience to generate a set of guidelines for researchers to secure data. I condensed Aldridge et al.’s guidelines into the following table so readers could benefit from their information quickly. The entire article is well worth reading. TABLE 9.1  ■  G  uidelines for the Security of Digitally Held Qualitative Data Guideline

Definition

Guideline 1: Devise a written policy

A written policy for confidentiality and data security should be devised that is understood by research team members.

Guideline 2: Passwords

Protection by passwords to files, while minimal, should be employed.

Guideline 3: Encryption

Create “encrypted space” on computers and storage media (e.g., USB portable memory drives/sticks) for all data.

Guideline 4: Managing storage and deletion of data

Research managers need to supervise the process of data collection, and also its storage/deletion by all who come into contact with the data.

Guideline 5: Make back-ups

Make back-ups of data only to encrypted portable media (e.g., USB memory drives).

Guideline 6: Security in the field

Delete and permanently destroy notes held temporarily in any medium that is not encrypted (e.g., paper notes, voice recording) as soon as possible, after copying in more permanent encrypted storage.

Guideline 7: “Onscreen” working methods

Work with data on screen when possible, but when paper copies of data are produced, these should be shredded (using a crosscutting shredder) immediately after use.

Guideline 8: Deleting data

Deleting files from a computer’s hard disk is not permanent. Employ permanent methods.

Guideline 9: Sharing data via email

Never send non-encrypted confidential data by email.

(Continued)

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Definition

Guideline 10: Former employees

Put agreements in place with those employed to work with data (e.g., transcribers) requiring these individuals to return data and media on the devices in which they are stored.

Guideline 11: Tracker software

Tools are available to allow computing equipment to be traced, tracked, and wiped remotely. Researchers with a sizeable research team may wish to employee these.

Guideline 12: Anonymization

Early anonymization of interview transcripts and fieldwork notes is ideal with each name, place, and organization replaced with unique identifiers.

Guideline 13: Store data centrally

There is a move towards secure storage of data in central locations that can be accessed remotely by users, reducing copies. (e.g., a Virtual Private Network [VPN), Microsoft’s SharePoint).

Guideline 14: Security in public archives

If interview data pose confidentiality problems that prevent data being publically archived, individually negotiate agreements allowing other researchers access for secondary analysis and comparative research.

Source: Aldridge, Medina, and Ralphs (2010).

Finally, technology outpaces what many researchers, myself included, understand about security. Researchers will wish to utilize resources to make decisions around data security and to never assume standard ways of practice are the current, most correct practices. Future technologies are always in the works that may make current anonymization and data security techniques obsolete (Markham & Buchanan, 2012).

Culturally Responsive Visual and Virtual Research A major cultural consideration in research is—when is it appropriate in a given culture to capture images, and how does a researcher go about determining this? A truly responsive researcher may realize there are times when photographs or digital recordings of objects and settings will be necessary in lieu of people. Also, if the Internet is a culture, then certainly one can consider ways to be culturally responsive. This responsivity may have a different sense than what we have considered thus far. For example, bell hooks (1995) stated, “We judge on the basis of

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what somebody looks like, skin color, whether we think they’re beautiful or not. That space on the Internet allows you to converse with somebody with none of those things involved.” Others have noted in research with potentially vulnerable youth that the Internet allowed responsive, relational research. I am convinced from this study and the responses I have received from other Internet researchers that the potentials of the Internet for social research which aim to uncover new aspects of vulnerable and often stigmatized individuals or groups have yet to be discovered. (Holdge-Hazelton, 2002, p. 12) Yet others caution when people in the Internet identify as a woman, sexually diverse, and/or from nondominant ethnic and race groups, they are communicated more frequently with violence, slurs, pejorative, and racialized comments than Internet members from majority, power status groups (Gardiner et al., 2016). This area needs more scholarly research, but it seems when an Internet user has no cloak of anonymity (e.g., public status such as a writer, professor, athlete) or decides to divest themselves of the cloak, they become open to cultural issues reflective of offline life but in a heightened manner. Along with positions just discussed, poverty and access to the Internet are issues to grapple with in a responsive fashion. In the United States, access to the Internet through the public school and library system has greatly leveled this playing field. Many more countries have access to the Internet than in the past; but within those countries, there are still groups that do not have access or choose not to have access (e.g., the Amish in the United States). In the United States, 15 percent of people as of 2015 did not use the Internet. These people were primarily the elderly, people without a high school education, and rurally located. Researchers need to consider who is missing from the Internet culture and why (Anderson & Perrin, 2015). A final area for cultural responsivity of the many possible to consider is user perceptions of the cultural “rules” within the Internet community in which they are nested. Rather than taking a stance that the Internet is public, a relational, culturally responsive researcher will wish to consider how the group they are interested in researching perceives their presence on the Internet (public, private, somewhere in between) and structure their study around those cultural norms. AoIR’s (Markham & Buchanan, 2012) Internet research ethics statement is an excellent example of a culturally responsive stance. The researchers and association saw a need and filled it from the ground up saying, The intention was to develop guidelines from the bottom up—i.e., out of the day-to-day practices of researchers in a wide range of disciplines, countries and contexts, in contrast to a more usual top-down approach that tries to provide a universal set of norms, principles, practices, and regulations. This approach was crucial because the enterprise of internet research is expansive— that is, globally informed—but also situated in innumerable locales.

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The document is truly an example of becoming culturally responsive even in its very creation as evidenced in the researchers representing nine countries thus far. The areas of visual and virtual research addressed in this chapter are so vast that I have provided just some of many important issues to consider. I also know this chapter of all the content in the book will be the most rapidly changing, even as the book goes to press, due to the rapid advance of technology. Therefore, in conclusion, I challenge readers to think creatively of how technology might be harnessed in human research, while thinking thoughtfully about how to continue becoming culturally responsive ethical researchers.

Reflexive Questions Visual Research 1. Who does an image belong to? 2. When is an image private or public? 3. What are your experiences with images? •• Are images something you have considered in depth? •• If not, how might you go about identifying your perspective on images and then trouble these perspectives? 4. What do images, if anything, convince you of? 5. How have you used or might you use images in research? 6. When is the use of human images an appropriate choice for researchers? 7. When might human images not be needed? Just one example in this area is an increase in researchers requesting to video record interviews via the Internet. When should this occur and when should the Internet interview occur but with only sound recording? 8. How can potential money issues in photography research be reduced? •• Who supplies cameras? Who is responsible for cameras loaned to participants if it is damaged or not returned? •• How does photo development occur? •• If photography lessons are involved, how is the cost supported? 9. In some cultures, such as the United States, mobile phone cameras are seemingly ubiquitous. •• What groups may not have access to this resource? •• What potential issues might occur with a researcher taking advantage of these types of cameras?

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Internet Research 10. How would a researcher justify the use of the Internet for data collection? 11. What ethical issues may occur when a researcher chooses to collect data via the Internet (e.g., SKYPE interviews): •• What participant groups do they potentially lose? •• How might issues of confidentiality be addressed? •• What are the pros and cons of face-to-face and virtual interviews? 12. Traditionally a researcher was advised to collect data in person whenever possible. Why was this? 13. What ways would you be comfortable collecting data in the Internet? What ways would you need to gain more experience with in order to utilize them in a research study (e.g., Twitter, Wiki page development)? These questions are just a few I sampled from the Association of Internet Researchers’ (AoIR) extensive list to give readers a sense of what an excellent resource this association is. For the entire list, please see http://aoir.org/reports/ethics2.pdf. The list below begins with common questions asked in the course of a research project. The bullet points represent more specific considerations that arise in Internet-related contexts.

How is the context defined and conceptualized? ••

Does the research definition of the context match the way owners, users, or members might define it? (Parameters such as “culture,” “person,” “dataset,” and “public text” each carry different ethical expectations for researchers.)

••

Are there distinctions between local contextual norms for how a venue is conceptualized and jurisdictional frameworks (e.g., Terms of Service, other regulations)? For example, if the Terms of Service defines the space as off limits for researchers, but individuals want to participate in public research of this space, what risk might exist for either the researcher or individuals involved?

••

What are the ethical expectations users attach to the venue in which they are interacting, particularly around issues of privacy?

••

If access to an online context is publicly available, do members/participants/ researchers perceive the context to be public?

How are data being managed, stored, and represented? ••

What method is being used to secure and manage potentially sensitive data?

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••

What unanticipated breaches might occur during or after the collection and storage of data or the production of reports?

••

What are the potential ethical consequences of stripping data of personally identifiable information?

••

If future technologies (such as automated textual analysis or facial recognition software) make it impossible to strip personally identifiable information from data sets in repositories, what potential risks might arise for individuals?

How are findings presented? ••

What immediate or future risk might occur by using exact-quoted material in published reports? (For example, while a participant might not think his or her information is sensitive now, this might change in 5 years. What protections might be put in place to anticipate changing perceptions?)

••

Are individuals adequately protected in prepublication reports such as workshops, conferences, or informal meetings?

What are the potential harms or risks associated with this study? ••

What is the potential harm or risk for individuals, for online communities, for researchers, for research?

••

How is vulnerability determined in contexts where this categorization may not be apparent? (e.g., How do you know if someone is a minor, for instance?)

••

What possible privacy-related harms may occur? For example, might online groups disband or individuals cease to use an online support group or withdraw from blogging activities because of the presence of researchers; might individuals be upset that their perceived privacy has been violated; might individuals object to having their writing or speech anonymized, preferring to remain known and public in any published results?

••

Does our research adequately protect the researcher as well as the community/ participant?

What are potential benefits associated with this study? ••

Can we be sure the data collected from online sites, forums, and communities are “legitimate” and “valuable”? How are we recognizing the autonomy of others and acknowledging that they are of equal worth to ourselves and should be treated so?

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••

Will informed consent be required from participants? If so, what procedures to obtain consent will be followed (e.g., print or digital signatures, virtual consent tokens, click boxes, or waiver of documented consent)?

••

Will consent be obtained just from individuals or from communities and online system administrators?

••

What ethical concerns might arise if informed consent is not obtained?

What particular issues might arise around the issue of minors or vulnerable persons? ••

In situations where identity, age, and ability of the participant are unknown or hidden, and harm cannot be determined as an a priori category based on known vulnerability of participants, how will harm be considered as an ethical concern and operationalized in the study?

••

How are minors identified as “minors” in contexts where demographic information is not required? What harm might result from asking (or not asking) for participants to reveal their age?

••

How will parental or guardian consent be obtained in addition to assent where required by research regulations? What risks might arise in this particular consent process? (for any or all parties, including the minor, the parents, and the researcher)?

Reflexive Course Experiences See Appendix F for details on the following course experiences which complement this chapter (Flip-Flop Debate; Speed Discussion; Doodle IT; Interview a Researcher). 1. Research ethics issues to debate could be •• When should someone expect confidentiality on the Internet? •• When should a researcher seek a participant’s permission to conduct research on the Internet? •• If researchers are allowed to take pictures in public spaces, should they?

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2. As a small group, discuss in what ways, if any, has this chapter began to be outdated. If new questions about visual and virtual ethics have begun to emerge, conduct an Internet search to see how these are being resolved. 3. As an individual or small group conduct a literature review of a specific aspect of visual or virtual research. What methodological and ethical issues are being addressed? For example, what have researchers written about ethics and blogging research? Groups should challenge themselves to present the findings to the larger group in a novel visual or virtual way.

Resources AoIR (Association of Internet Researchers) http://aoir.org/ethics/ This group has one of the most comprehensive and recently updated ethical codes for the Internet. They describe themselves as an international academic association dedicated to the advancement of the cross-disciplinary field of Internet studies. Ethics Guidelines for Internet Mediated Research from the British Psychological Society http://www.bps.org.uk/system/files/Public%20files/inf206-guidelines-forinternet-mediated-research.pdf International Journal of Internet Research Ethics While this journal seems to be inactive, past issues have a wealth of information. http://ijire.net/

EPILOGUE

T

his text, for novice and expert researchers alike, is about thinking, considering, and wondering what we might have done differently, deciding how to proceed going forward, and taking time to reflexively engage with the ideas of ethics, research, and cultural responsivity throughout our research careers; it is about Becoming. The process of becoming is necessarily ongoing since no one can be said to have arrived at full ethical understanding and action or cultural responsivity. Instead, ethical researchers try to find a receptive stance that allows them to continuously learn and grow. Therefore, it is my belief that researchers should have more questions that emerge as they engage with this text; not less. There should not be a sense of resolution to what we are wondering about but engagement in ideas of culture, responsivity, relationship, and reflexivity as readers begin to create, alter, or refine their ethical positions in relation to research. When reflexively considering research ethics, the book’s front cover image of a spider’s web is one possible metaphor for culturally responsive research ethics. A spider web may be described as delicate, flimsy, or filmy. However, a strand of spider dragline silk of equal thickness to a strand of steel is 5 times stronger than the steel (CBS, 2011). The gossamer, fine spider web is the focus of much research due to its “incredible strength and shock absorbing properties” (Kaplan, 2008). Research participants as vulnerable yet capable and competent are like a spider web. Yes, potentially vulnerable, but potentially strong and resilient simultaneously. It is up to the culturally responsive, relational, reflexive researcher to read, consider, ask, and most importantly listen, in order to enter into respectful and productive research relationships that nurture capabilities and competencies. Maria: I am at a student’s wedding meeting his partner for the first time. She is radiant, standing in sunlight, on the deck to their home . . . just married. He laughs as he puts an arm around her saying, “She was the gatekeeper of the site where I did an ethnography. You know, the one you supervised.” Then mischievously, “That is when we started dating.” I am instantly as two people in one body. One feels their happiness and joy. The other is glad I didn’t know this. How would I have reacted? How should I have reacted? How would you react? Researchers are people first. In every act of human research is the messy joy of ethics, humanity, being, and becoming.

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APPENDIX A

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his is an abbreviated template of a course syllabus I use when teaching research ethics. Readers should utilize the contents as they wish.

RESEARCH ETHICS SAMPLE SYLLABUS SRM 684 RESEARCH ETHICS ONE CREDIT HOUR Course Description This course is an in-depth study of ethics with an emphasis on human research including the history of research ethics, research ethics theory, disciplines’ ethics codes, Institutional Review Boards (IRB), and distinctive respondents. Students will receive an IRB training certificate, learn how to prepare an IRB application if need be, explore their disciplines’ code of research ethics, and begin to develop their own ethical research stance.

Objectives Through reading, reviewing literature, receiving IRB training, reflecting, scholarly writing, and actively inquiring into research ethics students will • Understand and evaluate the ethical research stance of major theorists • Become familiar with the history of research ethics • Use research ethics terms in a scholarly fashion • Be exposed to an array of possible ethical stances and their relation to research • Complete an online test to receive an IRB training certificate with CITI or some other approved group • Articulate personal and theoretical research ethics stance • Experience and explore the role diversity plays in research ethics

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• Explore the concept of reflexivity in the role of ethics • Consider how to contribute to the community and participants through research

Assignments 1. IRB Training Certificate: Follow the link on the course website to study for and take a test to receive an IRB Training Certificate. Give the course instructor a copy of the certificate. It is suggested you put this training information on your vita. You may wish to develop a section on your vita just for ethics. It is estimated this assignment will take 5 hours. If you already have an IRB certificate from CITI or another group, a copy satisfies this requirement. 2. Copy of Disciplines’ Code of Ethics: Obtain and read a copy of your disciplines’ research ethics code. Give a copy of the code (full text if possible) to the instructor. If you do not have a code of ethics in your discipline, inform the instructor and read AERA’s or APA’s. It is suggested you cite the code, if possible, in your research stance paper. 3. Ethical Dilemmas: Type up one ethical scenario that has occurred to you in the type of research you conduct or could occur in your research. This should be prepared with class discussion in mind. Provide possible solutions. Post on Blackboard under assignments. 4. Critical Ethics Jigsaw: With a partner, sign up for one of the critical ethics chapters and prepare a one-page overview handout of the chapter. You will present to a small group on this chapter. Read more about the jigsaw as a teaching strategy here. https://en.wikipedia.org/wiki/Jigsaw_(teaching_technique) 5. One-page handout and 30-minute group presentation on a research ethics book: With the other people who read a book on your topic develop a 30-minute presentation and a one-page handout summarizing the book to be presented in class. 6. Five- to seven-page ethical stance paper: Develop an ethical stance paper using at least 10 references. It is suggested that the first page of the paper reviews research ethics broadly and then flow into your own personal stance ending with a tie directly into your research area.

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Course Calendar Topic

Readings

Assignments Due

Introduction

History of Social Science Ethics

By Jan. 17 submit one real ethical research dilemma to be used in class.

Wolcott’s Sneaky Kid Qualitative Research and Relational Ethics

Wolcott’s Sneaky Kid, The Brad Saga Continues, The Return, Lincoln’s IRB & Methodological Conservatism, Punch’s Politics & Ethics in Qualitative Research

Quantitative Research and Ethics

Ellis, Relational Ethics

Book Presentations Copy of Disciplines’ Code of Ethics

Relational Ethics

Rough Draft of Ethical Stance Papers to Peer by email Critical Ethics

The critical chapter you signed up for.

Critical Ethics Jigsaw Book Presentations Peer Feedback in Class on Ethical Papers

Culturally Responsive Relationally Reflexive Ethics

CRRRE article Lahman et. al.

Research Evening at the University Center

Present your ethics paper as a poster. You may create a poster with other classmates.

Ethical Stance Papers and IRB Training Certificate Due

Possible Course Textbooks Israel, M. (2014). Research ethics and integrity for social scientists: Beyond regulatory compliance. Thousand Oaks, CA: Sage. Lahman, M. K. E. (2018). Ethics in social science research: Becoming culturally responsive. Thousand Oaks, CA: Sage.

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Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. Thousand Oaks, CA: Sage.

Possible Course Readings Brown, B. L., & Hedges, D. (2009). Use and misuse of quantitative methods: Data collection, calculation, and presentation. Handbook of social research ethics, 373–385. Cannella, G. S., & Lincoln, Y. S. (2017). Ethics, research regulations, and critical social sciences. The SAGE Handbook of Qualitative Research, 83. Christians, C. G. (2017). Ethics and politics in qualitative research. The SAGE Handbook of Qualitative Research, 66. Ellis, C. (2007). Telling secrets, revealing lives: Relational ethics in research with intimate others. Qualitative Inquiry, 13(1), 3–29. Kitchener, K. S., & Kitchener, R. F. (2009). Social science research ethics: Historical and philosophical issues. The handbook of social research ethics, 5–22. Lahman, M. K., Geist, M. R., Rodriguez, K. L., Graglia, P., & DeRoche, K. K. (2011). Culturally responsive relational reflexive ethics in research: The three Rs. Quality & Quantity, 45(6), 1397–1414. Lincoln, Y. S. (2005). Institutional Review Boards and methodological conservatism: The challenge to and from phenomenological paradigms. In Norman K. Denzin and Yvonna S. Lincoln (Ed.). (2005). The Sage handbook of qualitative research (3rd ed., pp. 165–181). Thousand Oaks, CA: Sage. Wolcott, H. F. (1983). Adequate schools and inadequate education: The life history of a sneaky kid. Anthropology & Education Quarterly, 3–32. Wolcott, H. F. (2002). Sneaky kid and its aftermath: Ethics and intimacy in fieldwork. Rowman Altamira. Chapters 2, 3, and 4

Possible Critical Jigsaw Readings (This handbook has many possible readings.) Mertens, D. M., & Ginsberg, P. E. (2009). The handbook of social research ethics. Thousand Oaks: Sage.

Books (You may choose one of these books or request instructor permission for a book you have identified.) Benoit, E., Jansson, M., Marshall, A., & Riecken, T. (eds.). (2006). Ethical issues in community-based research with children and youth. Toronto, Canada: University of Toronto.

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Gray, F. (1998). The Tuskegee syphilis study: The real story and beyond. Montgomery, AL: New SouthBooks. Hornblum, A. (1998). Acres of skin: Human experiments at Holmesburg Prison. New York: Routledge. Humphreys, L. (1970). Tearoom trade: Impersonal sex in public places. Chicago: Adline. Liamputtong, P. (2007). Researching the vulnerable. London: Sage. Plant, R. (2011). The pink triangle: The Nazi war against homosexuals. New York: Henry Holt. Rees, L. (2005). Auschwitz: A new history. New York: Public Affairs. Washington, H. (2006). Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Harlem Moon, Broadway Books. Weindling, P. J. (2004). Nazi medicine and the Nuremberg trials: From medical war crimes to informed consent. New York: Palgrave Macmillan.

(Appendices B, C, D, and E are graduate student papers that were developed in a one-credit-hour course on research ethics. After engaging deeply with research ethics history, dilemmas, discipline codes, readings, and discussions, students are asked to develop their own aspirational stance in an area.)

APPENDIX B

T

he following is an initial student ethical stance developed in a one-credit-hour research ethics course.

RESEARCH WITH NATIVE AMERICAN COMMUNITIES Elizabeth Scott-Janda Many protections have been put in place for the benefit of individuals who participate in social science research activities. However, these protections have been based on a constellation of issues as they are recognized by the dominant culture, and so although they are intended to protect vulnerable participants (who are often part of minority groups), these protections still represent the priorities of that culture. Minority participants may still experience problems that are not addressed by measures such as IRB reviews and consent forms, and specific minority cultures are concerned about past research violations that are not as yet recognized by mainstream authorities. Thus, some research participants can still be subject to harm even when the research is correctly reviewed and IRB procedures are faithfully followed. In this paper, I discuss the particular ethical issues that arise when doing research with American Indian or Alaska Native (AIAN) communities. After briefly sketching some of the history and background of protections that are in place due to federal oversight and the IRB process, I will outline incidents of research misconduct involving AIAN participants that have not been reflected in the current rules and give some of the ways in which AIAN peoples have stated that these protections are not sufficient for their communities. Additional measures that they typically require in order to give tribal permissions will be outlined. Finally, I offer my own ethical stance, as a White researcher who anticipates working alongside Native peoples to do research focusing on the education of Native children.

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PAST ETHICAL PROBLEMS IN RESEARCH AND RESULTING PROTECTIONS Awareness of the potential for harm to research participants largely arose from the public revelations of egregious abuses in a series of unconnected human-subjects experiments, beginning with the horrific Nazi medical experiments conducted by a number of doctors on Jews, homosexuals, disabled Germans, and Roma peoples at concentration camps and hospital facilities during World War II (Weindling, 2004). The experiments were revealed during the Nuremberg Trials and resulted in a set of international guidelines for medical research, the Nuremberg Code, which included basic requirements for informed consent, and the concept of a risk-benefits ratio. However, examples of unethical research came to public attention a number of times during the following three decades, including the Holmesburg prison studies (Hornblum, 1998), which took place between 1951 and 1974, and the Tuskegee syphilis study (Gray, 1998), which denied effective syphilis treatment to just under 400 poor Black men in Macon County, Alabama, between 1932 and 1972. Largely because of the outcry over the Tuskegee study, more stringent protection measures were taken soon after details of the study arose in the U.S. press. A federal commission to study participant rights was established by the National Research Act of 1974, resulting in the Belmont Report of 1979, which set out three principles of ethical human-subjects research: respect for persons, beneficence, and justice. This report became the foundational document for current IRB (Internal Review Board) protections and additional protections required for federally funded human-subjects research. It is important that the main thrust of these regulations is to protect the individual rights of research participants—that is, the individual’s right to understand the research being conducted, the individual’s need to be able to give informed consent, to withdraw from a study, and to not be exposed to disproportionate risks. This emphasis on individual rights is consonant with traditional values in the United States, which was arguably founded on notion of individualism, and sees itself as an alliance of outwardly heterogeneous, but inwardly homogenous, Americans. It is important to realize that this mainstream picture of American society is not shared by all segments of our population, and hence the underlying philosophy of current IRB protections is not well matched to all Americans’ needs, as discussed in the next section.

ABUSES OF NATIVE AMERICAN COMMUNITIES IN THE NAME OF RESEARCH In contrast to the dramatic and outrageous incidents that captured public attention and led to the Belmont Report, Native American communities have suffered

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from a steady flow of exploitive research studies that have largely been unrecognized by the public, and so have failed to impact ethical policies. Early research abuses included 19th century “salvage ethnography” in which literally tens of thousands of every kind of handcrafted object were seized and removed to museum collections, and many pre-1980 studies conducted from the point of view of the Native as aberrant, abnormal or savage (Lomawaima, 2000). Other, more recent concerns arising from past incidents include research that does not ask or account for traditional environmental and health knowledge (Deer, 2006), lack of reporting results back to the community, lack of cultural appropriateness of research models, or raising difficult health issues without assistance in addressing the issues at the end of the study (Quigley, 2006), reporting of sensitive traditional knowledge, misrepresenting community knowledge, and the failure to hire research staff from the community when possible (American Indian Law Center, 1999), and “community members . . . (not being) included in scientific decision making bodies that set standards of exposure and risk of contaminants to community members” (Harding et al., 2012). Among the AIAN communities involved, although individual abuses are acknowledged, the greater harm from these practices is felt to be their impact on the community itself. Relative to more mainstream Americans, Native peoples are far more likely to experience themselves as integrally connected to their home communities and to be sensitive to interactions that either strengthen the overall community or undermine it. As Macaulay (1994) wrote, Outside research teams swoop down from the skies, swarm into town, ask nosy questions that are none of their business and then disappear, never to be heard from again. . . . These researchers will never know . . . the degree of hurt and anger felt by the community as a result of these actions. (as cited in Quigley, 2006, p. 133) These concerns tend not to be understood by outside researchers and are not addressed by typical ethical protocols such as IRB reviews and individual consent forms. As a result, as discussed in the next section, sovereign tribal communities have instituted their own research policies designed to protect community rights and traditional knowledge, which is seen as an important part of their collective heritage and identity (Carjuzaa & Fenimore-Smith, 2006).

TRIBAL RESEARCH POLICIES AND PROTECTIONS There are more than 500 federally recognized tribal groups in the continental United States, each one of which has the right to create its own policies concerning research that takes place on their tribal lands or involves its members. The comments made in this section must be understood to reflect trends and generalizations.

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Each Native group has a different culture and different priorities, which are reflected in its approach to research. Tribal governments generally have review processes for proposed research that take place within their governing structure. This may involve a formal permitting process, meetings with tribal committee, or required approval from a council of elders, but most tribal codes are based on the Model Tribal Research Code published in 1999 by the American Indian Law Center. Researchers must explain their research, including what the goals of the research are, why it should be done with this specific community, expected benefits to the community (which should be direct, if possible) and what risks are possible, both to the community and to its members. The researcher must then come to an agreement with the community regarding data handling, including confidentiality and data ownership and control, such as publication. For larger, well-funded research projects, Native communities may have higher expectations. These may include preferential hiring of research assistants from the tribal community, use of a paid Native facilitator/liaison, teaching research techniques to Native community members so that they can pursue research topics of their own interest, or involvement of a tribal community college (if applicable). Local cultural norms may also have to be honored, such as regular in-person, face-to-face interactions between the researcher and tribal members, providing meals at community meetings, attendance at community events, or other gestures that are considered to be polite and appropriate (American Indian Law Center, 1999; Mail et al., 2006). Additionally, increasing numbers of tribes are embracing community-based, participatory research models (CBPR), in which Native communities are treated as research partners, having input into what research questions should be pursued, taking part in research activities, contributing to reports of results, and often sharing authorship when results are published (Fisher & Ball, 2003; Jetter, et al., 2015; Mail et al., 2006; Pearson et al., 2014; Quigley 2006). All of these measures are intended to shift the balance of power between researchers and tribes back toward tribal authority and dignity (Lomawaima, 2000).

RESEARCH STANCE The present policies around Native research, as envisioned by the tribes themselves, represent a strong shift in the balance of power between the external forces of government and university and the tribes themselves. The magnitude of this shift has largely been determined by past imbalances in which Native peoples were routinely exploited by researchers, and felt powerless to stem a flow of artifacts, sensitive knowledge, and even human body parts (skeletons, samples, and more) away from the communities into the hands of museums, scholars, and external officials. The resulting research system has become multilayered and onerous for researchers, and yet the barriers are imposed by

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independent peoples who have weighed the consequences of making research within their communities more difficult. It is my position that all of the requirements imposed by Native peoples on researchers who work in their communities or on their lands should be honored to the fullest extent possible. If it is not possible for a given researcher to comply with tribal regulations, the research should not proceed. Despite this conviction, there are circumstances under which full compliance with tribal requests leads to a true ethical dilemma. Such a case occurs when research takes place far from the tribal lands, in a mixed community. Yuan et al. (2014) describe the importance of studying such populations: More than 70% of AIAN peoples live away from their traditional lands. Of these, some have strong ties to their tribes and return to them reasonably often; others, however, do not. Yuan et al. describe these peoples as “urban Indians,” emphasizing that they have many of the same characteristics as their tribal members living on reservations, including higher incidence of poverty, less education, and higher rates of health problems like alcoholism and diabetes. Tribal governments often wish to review research involving any of their enrolled members, but in an urban environment a reasonable research sample might involve a number of different tribes. An example of such a site is Albuquerque Public School District (enrollment about 86,500). About 10% of APSD students are Native children, drawn largely from the 19 Pueblo Indian tribes of Northern New Mexico, but including Navajo and Jicarilla Apache students, and potentially others. A study at this district could involve more than twenty tribes, the district itself and a university IRB, and would be virtually impossible if individual tribal permissions are sought; a study conducted in a single classroom, with perhaps five tribes, the district and a university IRB would be inordinately difficult. Yet research with these students would be extremely valuable, and potentially of great benefit to them. The question a researcher faces is whether to avoid working with the Native students in this district (and therefore not producing needed work that might impact Native students’ educational outcomes), or complying with a permissions process that honors the letter of the law by involving the students’ home communities, but is subject to greatly increased timelines, much greater cost, and redoubled concerns about publication and presentation rights when the study is complete. Of course, that researcher is necessarily responsible to meet university publication guidelines in order to be eligible for retention, tenure or promotion. My current belief is that educational research focusing on the student population at APSD is urgently needed and should be attempted, but rules would have to be bent in an attempt to respect the intentions of the tribal review process, without perhaps being able to complete the entire process with all of the tribes represented. Any tribe that would be mentioned by name in a final publication should be consulted for permission, and a full review process must be conducted if requested, including submission of those portions of the final report having to do with that tribe’s members for review prior to publication. Moreover, a review process should be conducted with at least one tribe, perhaps whose members

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represent the largest number of (potential) Native research participants, or whose lands are located closest to the research site. If participants are not drawn predominantly from a single tribe, then it may be necessary to have the research reviewed by two or three tribes, so that as many of the participants as possible have both individual and community protections. However, in order to make such research possible, I believe that if a research sample includes people drawn from a variety of Native communities, it may be permissible to have the research reviewed by only tribes who may be mentioned in the final report, or which represent relatively large numbers of participants, or are especially close to the research site. In such cases, a researcher would need to proceed with utmost caution, awarding individual participants all protections requested by the tribes who reviewed the research, and striving to honor the spirit of Native sovereignty claims with respect to research in every possible way.

CONCLUSION This last case illustrates an unfortunate truth about Native research under current policies: It can seem forbiddingly difficult (Lomawaima, 2000). Timelines may be longer than similar projects done in other contexts, more funding is required, and issues around data ownership and publication permissions open the possibility that a researcher may not be able to share a completed study. Yuan et al. (2014) go so far as to suggest that university policies, including publication and tenure policies, should be rewritten to account for the greater difficulty of CBPR and working with tribal regulatory bodies, essentially urging universities to require fewer publications when projects are of this type, but that suggestion is unlikely to be broadly accepted in the near future. For these reasons, it is likely that less research will be done with tribal populations under these rules than could be done otherwise. Two possible resolutions may arise from this standoff: Either researchers will develop the special skills to make tribal negotiations and collaboration less onerous, finding creative ways to design research that surmount these difficulties as Yuan et al. (2014) suggest, or over time the tribes themselves may find ways to maintain their agency while opening the door wider for research work. In either of these cases, the balance of power between community members and researchers may be allowed to move more toward the center while more research is conducted that benefits tribal members.

REFERENCES American Indian Law Center. (1999). Model tribal research code, with materials for tribal regulation for research and checklist for Indian health boards (3rd ed.). Albuquerque, NM: American Indian Law Center. Retrieved February 6, 2016, from http://www.nptao.arizona .edu/research/nptaoresearchprotocolswebpage/ailawcentermodelcode.pdf

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Carjuzza, J., & Fenimore-Smith, J. K. (2010). The give away spirit: Reaching a shared vision of ethical Indigenous research relationships. Journal of Educational Controversy, 5(2), 1–10. Deer, F. (2006). Research perspectives in Indigenous education: The legitimacy of Indigenous knowledge. World Indigenous Nations Higher Education Consortium Journal. Retrieved February 5, 2016 from http://citeseerx.ist.psu.edu/viewdoc/down load?doi=10.1.1.500.7172&rep=rep1&type=pdf Fisher, P. A., & Ball, T. J. (2003). Tribal participatory research: Mechanisms of a collaborative model. American Journal of Community Psychology, 32(3/4), 207–216. Gray, F. (1998). The Tuskegee syphilis study: The real story and beyond. Montgomery, AL: New South Books. Harding, A., Harper, B., Stone, D., O’Neill, C., Berger, P., Harris, S., & Donatuto, J. (2012). Conducting research with tribal communities: Sovereignty, ethics, and data-sharing issues. Environmental Health Perspectives, 120(1), 6–10. Hornblum, A. (1998). Acres of skin: Human experiments at Holmesburg Prison. New York: Routledge. Jetter, K. M., Yarborough, M., Cassady, D. L., & Styne, D. M. (2015). Building research capacity with members of underserved American Indian/Alaskan Native communities: Training in research ethics and the protection of human subjects. Health Promotion Practice, 16(3), 419–425. Lomawaima, K. T. (2000). Tribal sovereigns: Reframing research in American Indian education. Harvard Educational Review, 70(1), 1–21. Mail, P. D., Conner, J., & Conner, C. N. (2006). New collaborations with Native Americans in the conduct of community research. Health Education & Behavior, 33(2), 148–153. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1978). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Bethesda, MD: Department of Health, Education, and Welfare. Pearson, C. R., Parker, M., Fisher, C. B., & Moreno, C. (2014). Capacity building from the inside out: Development and evaluation of a CITI ethics certification training module for American Indian and Alaska Native community researchers. Journal of Empirical Research on Human Research Ethics, 9(1), 46–57. Quigley, D. (2006). A review of improved ethical practices in environmental and public health research: Case examples from Native communities. Health Education and Behavior, 33(2), 130–147. Weindling, P. J. (2004). Nazi medicine and the Nuremberg trials: From medical war crimes to informed consent. New York: Palgrave Macmillan. Yuan, N., Bartgis, J., & Demers, D. (2014). Promoting ethical research with American Indian and Alaska Native people living in urban areas. American Journal of Public Health, 104(11), 2085–2091.

APPENDIX C

T

he following is an initial student ethical stance developed in a one-credit-hour research ethics course.

OLDER AGE IS A CHRONOLOGICAL PART OF LIFE, NOT A VULNERABILITY Elizabeth Smith

INTRODUCTION It is of utmost importance for researchers to conduct their research without creating more harm than good for participants involved in their studies. When conducting research with human participants, it is essential to take the appropriate steps to identify vulnerable populations and include adequate steps or adjustments into the research design and methodology. This paper will cover a short overview of the history of research ethics and then present information to support the ethical stance that members of the population who are 65 years and older should not automatically be classified as a vulnerable group for research purposes. Automatically labeling older people as vulnerable is problematic in several ways: (1) a label of vulnerability based simply on chronological age is ageist, (2) such a label reinforces any aging stereotypes held by researchers which may then be incorporated into the research itself, and (3) researchers may shy away from studying older adults to avoid the challenges and inconsistencies with Institutional Review Boards (IRBs) and other ethics boards.

HISTORY OF RESEARCH ETHICS There has been an increased focus on ethics in research in the last 60–70 years on a global level, starting with the Nuremberg Trials, which were held in 1945–1946 in response to the egregious acts of research committed by Nazis during World War II (Rees, 2005). The Nuremberg Trials resulted in the adoption of the Nuremberg Code, that provides ethical guidelines for conducting research with human participants (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Unfortunately, unethical studies were still conducted in the United States for several decades after the Nuremberg Code was adopted. For example, hundreds of black men were part of the 40-year-long 227

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Tuskegee syphilis study that denied treatment for syphilis even after a cure was discovered in the early years of the study (Gray, 1998). The research in Tuskegee was not an isolated incident. Ethically compromised research was conducted on prisoners at Holmesburg Prison in Pennsylvania over a span of 20 years before ending in 1974 (Hornblum, 1998). In response to such unethical research, the United States adopted the Belmont Report, a compilation of principles and guidelines to help researchers resolve ethical issues and challenges when working with human participants. The Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979) lists three basic ethic principles for researchers to consider—respect for persons, beneficence, and justice—and breaks the application of these principles into three categories—informed consent, assessment of risks and benefits, and selection of subjects. The ethical stance presented in this paper stems from selection of subjects, particularly the consideration of vulnerable subjects in studies. The Office for Human Research Protections (OHRP) issued an Institutional Review Board (IRB) Guidebook several decades ago to provide guidance for IRB boards across the country. The Guidebook cautions users that it has not been updated since 1993 and contains a mixture of valid and obsolete information (OHRP, 1993). Users of the IRB Guidebook are encouraged to verify the validity of sections of the Guidebook before moving forward with research involving human subjects, yet such verification may be a challenging task for some researchers. Chapter 6 of the Guidebook, labeled “Special Classes of Subjects,” directs researchers to protect the welfare of vulnerable subjects, listing “elderly/aged persons” as a subgroup of the special classes of populations (OHRP, 1993). The Guidebook states, “It is generally agreed, however, that the elderly are, as a group, heterogeneous and not usually in need of special protections, except in two circumstances: cognitive impairment and institutionalization” (OHRP, 1993, Elderly/Aged persons section, para. 2). The Guidebook goes on to discuss the importance of conducting research with participants from the older population and states that age alone cannot be a determiner of ability to consent. The combination of the organizational and instructional ambiguity of the IRB Guidebook, the classification of elderly/aged persons as a population of special consideration within the vulnerable subjects section, and the acknowledgment of the need for more research on older people results in mixed messages and interpretations which may, in turn, result in varied approaches to gerontological research from both researchers and IRB or ethics boards.

GERONTOLOGY AND THE FUTURE OF AGING By the year 2030, 20% of the population in the United States will be comprised of adults aged 65 years and older (Novak, 2012). Many other countries around the world will experience a similar situation. It is our duty as researchers and

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practitioners to learn and research as much as we can about this population in preparation for the upcoming demographic shift. We know the age shift is going to happen and now is the time to change our thinking and research practices. Aging research in the social sciences dates back to the mid-19th century, although the primary focus of the research at that time was on the problems or issues related to aging (Novak, 2012). Gerontology is considered a multi-disciplinary field, seeking to understand the experience of aging from a bio-psycho-socialspiritual viewpoint. I am trained as a social gerontologist, a newer term in use since 1954, with a focus placed on the “psychosocial, socioeconomic-environmental, and practice-related studies of aging” (Novak, 2012, p. 27). In the last 60 years, the field of gerontology has begun to shift focus from a medical model of care, with a focus on the diagnosis and cure of illnesses, to a more person-centered (or social) model of care, with a broader focus on health and aging (Novak, 2012), while considering the individual needs, circumstances, and abilities a person has (Kivnick & Murray, 2001). The shift toward a more person-centered care model is one that gives context for the personal and varied experiences of individuals and places a higher level of value on an individual’s autonomy, rights, and needs. Such a focus is one that should be paralleled in gerontological research and the ethics adopted by gerontological researchers themselves. It is a mistake to allow the classification of our older population as vulnerable to remain in a grey area that is open to interpretation by both researchers and ethic committees.

DOES AGE ALONE CONSTITUTE A LABEL OF VULNERABILITY? Vulnerability According to Liamputtong (2006), there are varied definitions and arguments for what makes a person or a population vulnerable. For the most part, it is agreed that diminished autonomy can place a person in a vulnerable position. Different researchers give different descriptors or identifiers when talking about vulnerable populations, some of which lead to the inclusion of many groups of people, including older adults (Liamputtong, 2006). Moore and Miller (1999) note that having a universal definition of the term vulnerable is challenging, with many opinions and frameworks being used in research. Coming from a nursing research framework, Moore and Miller (1999) seem to think it is appropriate to label older persons as vulnerable, but note that older persons are often excluded from research without clear reasoning provided by researchers. Several fears were discussed as possible reasons for the exclusion of older participants by researchers including fears of overly cumbersome protocols, IRB disapproval related to the inclusion of this “vulnerable” population, and inability to access the older adult population (Moore & Miller, 1999). In nursing research, which is likely grounded in more of a health care or medical framework, it would be appropriate to consider a label of

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vulnerability for older persons who may be facing challenges like cognitive decline or residency in an institution that make them vulnerable, but simply excluding participants because they are members of the older population is a problem.

Ageism and Aging Stereotypes in Research Ageism, a term referring to the negative beliefs, ideas, and attitudes toward aging (Novak, 2012), has been referred to as a quiet or silent epidemic and often manifests itself in stereotypical representations of older people in society and in the considerations of ethics boards, regardless of the cognitive status or health status of the potential subjects/participants being considered (Pachana et al., 2015). Iltis, Wall, Lesandrini, Rangel, and Chibnall (2009) note, “there is no substantive guidance available through OHRP about how to understand vulnerability, determine whether a study includes vulnerable persons, or how to protect vulnerable persons” (p. 39). If the guidance provided through OHRP for IRBs and researchers is vague, how then can researchers ensure that ageist beliefs are not playing a role in the unnecessary classification of their participants as vulnerable simply because of age? Bayer and Tadd (2000) looked at the research protocols of 225 studies that were submitted to research committees during a seven-month time frame in 1999. Of the studies reviewed, 85 of them included an age restriction found to be inappropriate by the authors, yet the ethical review boards did not challenge or ask for justification for the age restriction from the researchers (Bayer & Tadd, 2000). It was also found that researchers included comments in their studies about the necessity for participants to be, “‘fully competent’, ‘reliable’, or ‘without cognitive impairment’” (Bayer & Tadd, 2000, p. 993), which are seemingly ageist comments. Some researchers argued for an upper age limit for participants to reduce dropout rates, implying that older participants would not be reliable as study participants. Situations like this, from the side of both the researchers and the ethics boards, are blatant examples of ageism and age stereotyping in research. Pachana and colleagues (2015) shared similar concerns: “Aspects of ageism and paternalism could unwittingly come into play with respect to ethical review panels in the way that such attitudes penetrate a wide variety of organizations” (p. 702). Again, if older members of our population are excluded from research, how will they benefit from advances in research that cannot be generalized to their age group?

Potential Challenges With IRBs Pachana et  al. (2015) recently conducted a study with 157 researchers as subjects with the goal of understanding issues brought up by the ethics boards for the different researchers. The researchers participating in the study were from Australia and the United States and work with older populations. The study revealed that the researchers frequently felt held back when it came to their research with older persons because the progression of their work,

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“was significantly impeded by ethics committees with whom they interacted” (Pachana et al., 2015, p. 705). Particularly, there seemed to be a disconnect between the researchers’ views of necessary steps to protect their “vulnerable” subjects, some of whom were physically and cognitively healthy older adults, and the overprotective stance taken by review boards who were trying to protect the “vulnerable” research subjects whose only vulnerability was their chronological age. Furthermore, the researchers who participated in the study reported that they had witnessed other researchers leaving the gerontological research field entirely and had personally lost both participants and studies as a result of interactions with ethics boards over vulnerable participants (Pachana et al., 2015).

Older Age is Part of Life, Not a Vulnerability More research of older adults, both vulnerable and nonvulnerable, needs to take place in order to gain a greater understanding of the aging process in all areas. It is possible for the vulnerable pockets of the older population, like those people with cognitive impairments or living in a residential institution or community, to be given their due consideration without condemning the older population as a whole to yet another layer of ageism and stereotyping. Researchers and practitioners who are currently working with truly vulnerable pockets of the older population are striving to be flexible and transparent when it comes to the ethical considerations that arise when working with such populations and are utilizing the feedback of participants themselves as well as their gatekeepers (Wilson, 2011). The proportion of the population over the age of 65 with cognitive impairments is relatively small with an estimated 14% of people over the age of 71 years having some type of dementia (Alzheimer’s Association, 2015). It is also interesting to note that approximately 5% of the population over the age of 65 years lives in a residential institution or community like an assisted living or skilled nursing community, a relatively small percentage of the entire older adult population (Novak, 2012). Should the experience of 5% of the population really set the stage for the other 95% of older adults? In addition, a Facility Bill of Rights has been developed for use as a guideline for both residential communities and researchers when studies are being conducted in a community based setting (Cartwright, 2007). The truly vulnerable members of the older adult population are already protected when it comes to research, and for reasons other than their age. The National Association for Professional Gerontologists (NAPG, n.d.) has a Code of Ethics that calls for gerontologists, both researchers and practitioners, to perform their professional activities without bias of any kind. The Code of Ethics also calls for sensitivity to “cultural, individual, and role differences in service, education, administration, research and study related to gerontology” (NAPG, n.d.). For a gerontologist to look at the population he or she is working with and truly strive to embrace a bias-free approach, it is crucial that there is

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one less layer of ageism to deal with. Gerontological research requires an ethical stance of flexibility and critical thinking, with the ability to take into account the physical, social, and cognitive differences that can exist between older persons while leaving behind as many ageist beliefs, stereotypes, and labels as possible. Removing the over-use of the vulnerable label for the majority of older adults based on chronological age alone would create an important shift in gerontological research both from an approval and research standpoint to an end-user standpoint for the general population. The field of gerontology is attempting to lead the way by embracing person-centered models that focus on a person’s autonomy, and it is time for the ethical side of research to get aligned with the field’s movement.

REFERENCES Alzheimer’s Association. (2015). 2015 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 11(3), 332. Retrieved from: https://www.alz.org/facts/ downloads/facts_figures_2015.pdf Bayer A., & Tadd, W. (2000). Unjustified exclusion of elderly people from studies submitted to research ethics committee for approval: Descriptive study. BMJ, 321, 992–993. Cartwright, J. C., & Hickman, S. E. (2007). Conducting research in communitybased care facilities: Ethical and regulatory implications. Journal of Gerontological Nursing, 33(10), 5–11. Gray, F. D. (1998). The Tuskegee syphilis study. The real story and beyond. Montgomery, AL: New South Books. Hornblum, A. (1998). Acres of skin: Human experiments at Holmesburg Prison. New York: Routledge. Iltis, A. S., Wall, A., Lesandrini, J., Rangel, E. K., & Chibnall, J. (2009). Federal interpretation and enforcement of protections for vulnerable participants in human research. Journal of Empirical Research on Human Research Ethics, 37–41. doi: 10.1525/jer.2009.4.1.37. Kivnick, H. Q., & Murray, S. V. (2001). Life strengths interview guide: Assessing elder clients’ strengths. Journal of Gerontological Social Work, 34(4), 7–32. doi: 10.1300/J083v34n04_03 Liamputtong, P. (2007). Researching the vulnerable. London: Sage. Moore, L. W., & Miller, M. (1999). Initiating research with doubly vulnerable populations. Journal of Advanced Nursing, 30(5), 1034–1040. National Association for Professional Gerontologists. (n.d.). Code of ethics. Retrieved from http://www.napgerontologists.org/code_of_ethics.html

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National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research. Washington DC. Department of Health, Education, and Welfare. Novak, M. (2012). Issues in aging (3rd ed.). Boston, MA: Pearson. Office for Human Research Protections. (1993). Institutional Review Board Guide­ book (6). Retrieved from: http://www.hhs.gov/ohrp/archive/irb/irb_guidebook.htm Pachana, N. A., Liddle, J., Peel, N. M., Beattie, E., Juang, C., & Knight, B. G. (2015). Can we do better? Researchers’ experiences with ethical review boards on projects with later life as a focus. Journal of Alzheimer’s Disease, 43, 701–707. Pipher, M. B. (2002). The middle of everywhere: Helping refugees enter the American community. Boston, MA: Houghton Mifflin Harcourt. Rees, L. (2005). Auschwitz: A new history. New York: Public Affairs. Wilson, C.B. (2011). The value of reflexivity in resolving ethical dilemmas research in care homes. Journal of Advanced Nursing, 67(9), 2068–2077.

APPENDIX D

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he following is an initial student ethical stance developed in a one-credit-hour research ethics course.

ETHICS SHOULD BE ABOUT PROTECTING PARTICIPANTS, NOT THE RESEARCH INSTITUTION Suzanne V. Landram The need to explore and derive the root of knowledge apparently surpasses the ethical treatment of the research subjects. The ethical stance I take is that even though humankind has shifted from a historical background of gruesome unethical treatment of subjects (i.e., human and animal) in research, we still have based the efforts of deriving knowledge on the protection of the system governing the research and not for the protection of the subject. Justification, as well as the exploitation of unethical human research, has led to ethical codes of conduct, regulations, and standards such as the need for a participant’s consent to be in a study. Today, in the United States, any researcher conducting human research at an institution receiving federal monies must seek approval, from a formally designated ethics review committee, for their intended study before the research begins. Nevertheless, an ethical review board can only do so much as to what it can and will protect. As many researchers may find an ethical review committee such as the U.S. Institution Review Board (IRB) to be “picky, tedious, rule-bound, irritating, and Big Brother-ish” (Lahman, Geist, Rodriguez, Graglia, & DeRoche, 2010). I would say that the main problem with institution ethical review boards does not fall on the given committee’s overbearingness to oversee each study conducted by a researcher, but rather on the misguiding, mislead, flawed system of protecting the institution and not the participants or researchers conducting the studies.

HISTORY OF ETHICS Before there were any set regulations and standards for the protection of human subjects in research most experimentally based human research relied heavily

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on the use of criminals, those deemed mentally insane, and the impoverished (Mitchell et al., 2001). Ghosh (2015) stated that, the means of cadaver procurement at a time when human dissection was synonymous with capital punishment depended on illegal means such as grave robbing, body snatching and even murder for human bodies, which led to legalization of the use of unclaimed bodies, most of whom were poor people. (p.153) Century after century history has documented these events and the only questions that can be retrospectively asked are along the lines of, “was it worth the sacrifice or was it all in vain?” Even in 3rd century Greece, the royal authorities’ sanctioned physicians’ Herophilus and Erasistratus to do cadaveric dissections (Ghosh, 2015). Before Herophilus and Erasistratus little is known on the body due to religious moral and esthetic taboos that limited the exploration of the human body (von Straden, 1992). However, it is believed that these early physicians overcame the cultural stigmas, by the agenda of Greek leaders, to establish Alexandria at the heart of literacy and scientific learning (Ghosh, 2015). Fast forward to medieval Europe in Renaissance Italy where dissections were highly against religious beliefs, authorities, such as the Pope allowed for human research to be conducted in university settings only (Mavrodi & Paraskevas, 2014). Popular university settings like Bologna with leading scientist like De Liuzzi’s were teaching and conducting university sponsored anatomy exhibitions in which dissections were performed publicly on the bodies of executed criminals, both male, and female (Mavrodi & Paraskevas, 2014). It is reported that these bodies were provided to the medical school by the local public authorities (Ghosh, 2015). Each time history points to a societal governing authority that sponsors, and in some cases even provides, the researcher(s) with human subjects all for the sake of becoming the leading name for that type of exploratory research. In my opinion, these regulations of ethical codes came as a mere afterthought and a way for leading research establishments to remain dignified and to appease to any critics that found this type of work unethical, appalling, and unfounded. One thing that must not be overlooked in each historical case of these unethical treatments of humans in research is that regardless of what circumstances the study was conducted under does it further that societies’ exploration and search for knowledge and if so then can it be justified? As Kress (2011) stated, the most grotesque forms of harm are easily identified in biomedical research (e.g., Nazi experiments, Tuskegee syphilis experiments, Willowbrook hepatitis experiment); however, there have been psychological and sociological studies that have harmed people as well (e.g., Stanford prison experiment (Zimbardo, 1973), and Humphrey’s “tearoom” study (Humphreys, 1975).

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Haggerty (2004) characterized Zimbardo’s and Milgram’s studies, together with Laud Humphrey’s Tea Room Trade, as the inescapable referents in any discussion of research ethics in the social sciences. Each tragic event (e.g., the political uses of anthropology in Project Camelot during World War II and the exploitation and mistreatment of the Yanomami tribe’s blood in the late 1960s) raises important questions about informed consent, decep­tion, and manipulation of subjects, all of which are issues that ethics committees continue to grapple with today (Mills, 2003, p. 399). It is certainly true that ethical committees still struggle with upholding the ethical standards, and it is no wonder that the unethical treatment of humans in research has led to the tragic events on which our modern day ethical regulations and standards are based. Consequently, the pushes for fairer ethical treatment standards for humans in research had always existed to some extent even as far back as 4th century BC when the Hippocratic Oath was written. Several other articulate codes of ethics have been written through the centuries. For example, Thomas Percival presented Medical Ethics or a Code of Institutes and Precepts, which was adopted to the Professional Conduct of Physicians and Surgeons in 1803 (Lynoe, 1999, p. 30). Another example would be the Weimar Republic in Germany that passed a directive, in 1931, which included a demand for the informed consent of research participants (Hoeyer, Dahlager, & Lynoe, 2005).

TODAY’S IRB STANDARDS AND REGULATIONS: A FEW EXAMPLES OF A MISGUIDED, MISLEADING, AND FLAWED SYSTEM However, when it comes to the ethical regulations and standards about the concept of informed consent, I believe that the rights of the individual(s) being studied are still not being adequately upheld in many ways. For instance, consent of a participant is not merely a voluntary agreement, but the beginning of a process, in which the participant(s) will be informed, before the start of the study, of the purpose as well as any risks and/or benefits that occur with the research. I feel strongly that a participant’s consent does more to protect the researching institute than the participant due to the lack of protection of the participants’ rights during and after the data has been collected. My concerns for participants’ rights extend far past confidentiality and anonymity. Misguided. For instance, by current U.S. Institutional Review Board (IRB) standards, researchers conducting sensitive topic studies, who gain Full Board Review acceptance, are only asked as to what the potential risks and inconveniences might be to the participants. Given that those risks may include anticipated psychological, physical, sociological, financial, as well as economic threats to the participant, my unease lies with the current protocol of the regulated standards.

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For example, when it comes to any anticipated psychological or sociological risks the U.S. Food and Drug Administration (FDA) and IRB have nothing better to offer the researcher, if such a crisis was to occur, than to give their participants an ambiguous helpline phone number, or the local number to the university’s counselling center. I feel that there should be a more efficient and dignified protocol that the researching institutes can offer for their researchers, such as having a designated trained and licensed professional counselor (LPC) assigned, to each study that has an expedited or full-board review status, to help deal with such crises. Such as a trained professional that could assist the participants, as well as the researchers. Mislead. Another standard IRB protocol that I find dissatisfactory is [21 CFR 56.108(a) (3)], which requires ensuring “prompt reporting to the IRB of changes in a research activity.” I find this very discomforting in the fact that a participant could be put through some unethical scenarios that were not conveyed to IRB in the researcher’s application. However, unless a participant or a fellow researcher says something, or raises a red flag, to the IRB no one on the IRB committee would ever know that something unethical had occurred. In fact, the IRB members who sign off on an IRB application usually do not ever have to check on a study since the usual “change in a research activity” is just to update the status that the study has been completed. Meaning that unless one of the participants feels that they are being misled or misinformed and are compelled enough to talk to someone in IRB, above the principal investigator to shed light on an injustice act that may have occurred, then there is no check in on a project being conducted. Another example is in the confidentiality of participants identities being protected; this is very misleading. The fact is, confidentiality and anonymity cannot be guaranteed just upheld. Flawed. A third problem, and the final discussion, that I have with the IRB and FDA is about the fact that there are no standards or regulations to ensure how the participants’ data are handled after the data have been collected. Much of the data collected eventually turn into secondary data, which is not something that the researcher has to explain and gain consent from the participant unless a tissue or blood sample is taken. The problem occurs when all the identifiers in the collected data are not adequately taken out, and the study does leak identifiable information. This is very troublesome because of the potential risk of a participant’s identity being identified and then the everlasting impact that may have on the participant. Such cases as Wolcott’s (1983) article titled, “Adequate Schools and Inadequate Education: The Life History of a Sneaky Kid” that helped Wolcott, career-wise, in academia. In fact, Wolcott’s “researched data” went on to support him financially with royalties gained from his ethical book, as well as a play written on the matter. A classic case of a vulnerable participant being taken advantage of and exploited. As Mills (2003) expressed from historical records of the first horrific offenses to the present day guidelines, it seems somewhere along the line the ethical code for human research has wrongly fallen on the protection of the institutions rather than the participants we so desperately want to study, responsibly and with respect.

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MY STANCE As a researcher, I have to agree with Mills, these standards, and regulations that we apply to each new study become a common form of practice that is, routinely, done at the beginning of each study. However, these “common and routine” standards stem from a history of violations, malpractice, and downright unethical treatments of human participants in research. All researching institutions, today, strive to uphold ethical codes and have adopted regulated standards of practice; but I still believe that they are missing the main point. All of the researching ethical codes, regulations, and protocols that we have today still place the researching institutes at the heart of what’s protected instead of the subjects/participants, the actual root or basis of where that knowledge is being derived. In fact, as I have already stated above, the antiquity of human subjects in research includes a role of suffering and unwillingness on the participants’ behalves. Like the swing of a pendulum, the system (a.k.a. research institutions) has swung from a place of gruesome, appalling, inhuman treatments to a system that is misleading, illguided, and flawed with the focus never being on the protection of the participants but rather on the protection of the research institutions. My ethical research stance is grounded firmly on the protection and ethical treatment of the research participants. As I have stated above, the primary focus of research has always been centered on the protection of the researching establishments and never on the protection of the participants. I chose to write solely on the effects and impacts of ethical research on humans in this short essay, but let me be very clear and honest when I state that my quest for better protection and treatment of a given study’s participants does not lie exclusively on humans. In fact, my passion extends far greater with even more magnitude and verbal ferocity when it comes to the ethical treatment of animals in research.

REFERENCES Ghosh, S. K. (2015). Human cadaveric dissection: A historical account from ancient Greece to the modern era. Anatomy & Cell Biology, 48, 153–169. DOI:  10.5115/ acb.2015.48.3.153 Haggerty, K. D. (2004). Ethics creep: Governing social science research in the name of ethics. Qualitative Sociology, 27(4), 391–414. Hoeyer, K., Dahlager, L., & Lynoe, N. (2005). Conflicting notions of research ethics: The mutually challenging traditions of social scientists and medical researchers. Social Science & Medicine, 61, 1741–1749. Humphreys, L. (1975). Tearoom trade: Impersonal sex in public places (2nd ed.). Piscataway, NJ: Aldine Transaction.

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Kress, T. M., (2011). Critical praxis research. Explorations of Educational Purpose 19:127 DOI 10.1007/978-94-007-1790-9_9 Lahman, M., Geist, M., Rodriguez, K., Graglia, P., & DeRoche, K., (2010). Culturally responsive relational reflexive ethics in research: The three Rs. Qual Quant, 45, 1397–1414 DOI 10.1007/s 11135-010-9347-3 Lynoe, N. (1999). Between cowboy ethics and scout morality. Medical research ethics in practice Journal. Stockholm: Liber. Mavrodi A, & Paraskevas G. (2014). Mondino de Luzzi a luminous figure in the darkness of the Middle Ages. Croatian Medical Journal, 55, 50–53. Mitchell, P., Boston, C., Chamberlain, A., Chaplin, S., Chauhan, V., . . . Witkin, A. (2011). The study of anatomy in England from 1700 to the early 20th century. Journal of Anatomy, 219, 91–99. Doi: 10.1111/j.1469-7580.2011.01381.x Mills, D. (2003). ‘Like a horse in blinkers’: A political history of anthropology’s research ethics. In P. Caplan (Ed.), The ethics of anthropology: Debate and dilemmas (pp. 37–54). London: Routledge. Von Staden, H. (1992). The discovery of the body: human dissection and its cultural contexts in ancient Greece. Yale J Biology Medical, 65, 223–241. Wolcott, H. F. (1983). Adequate schools and inadequate education: The life history of a sneaky kid. Anthropology and Education Quarterly, 14, 3–32. Zimbardo, P. G. (1973). On the ethics of intervention in human psychological research: With special reference to the Stanford Prison experiment. Cognition, 2(2), 243–256.

APPENDIX E

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he following is an initial student ethical stance developed in a one-credit-hour research ethics course.

THE USE OF THE INTERNET AND SKYPE IN QUALITATIVE RESEARCH Samantha Estrada “The Internet is a social phenomenon, a tool, and also a (field) site for research” (Markham, Buchanan, & AoIR Ethics Working Committee, 2012, p. 3). Internet usage rapidly increased over the past decade. Since its conception in the 1980s, the number of Internet users has grown from 361 million to 1,967 million users. In other words, nowadays there are more than five time more Internet users than in 2000 (Tech Blog, 2010). Not only has the number of Internet users increased over time, but the number of countries with access to the Internet has also increased. In the early 2000s, the Internet was only available in Asia, North America and Europe. By the year 2010, regions such as Africa, the Middle East and Oceania/Australia had access to the Internet (Tech Blog, 2010). In research, as in many other aspects of daily life, the use of technology and Internet has increased. Researchers often take advantage of technology and the Internet to conduct research. One example of using technology and Internet in qualitative research is Pretlow’s Internet study on childhood obesity; likewise, Marwick describes the use of the social media outlet Twitter to conduct ethno­ graphy (2011).

INTERNET IN RESEARCH As with every other aspect of today’s life, technology now has a place in research. The primary argument against using the Internet in research is the lack of in person (Barak et al., 2008). However, it is the lack of eye-contact and the virtual anonymity that users find the most useful when it comes to online therapy (Barak, et  al., 2008). In therapy and interventions, another concern is the dependency on technology given that not having access to technology may

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prevent some individuals from receiving help (Barak et al., 2008). Internet-based interventions (IBIs) offer consumers an increased privacy and anonymity via a cost-effective method that may reach minority populations as well as people in isolated geographical locations (Changrani et al., 2008; Kuester, Niemeyer, & Knaevelsrud, 2016). For example, Knaevelsrud et al. (2015) were able to offer Internet-based interventions for posttraumatic stress disorder (PSTD) in areas of conflict in Iran. Reduction in attrition rate by ways of rescheduling interviews in contrast with face-to-face interviews is another advantage of using technology for research. Given the low cost of data collection, rescheduling may not have a high impact financially as it would if the interviews were conducted in person (Deakin & Wakefield, 2013). Moreover, health promotion using the Internet can reach consumers in their own home and with personalized messages in their own time (Dedding, van Doorn, Winkler, & Reis, 2011). In qualitative research data is usually collected by means of observations and interviews (Mayan, 2009). In fact, the most common methods of data collection are: (a) interviews, (b) observations, and (c) documents (Creswell, 2007; Patton, 2002). Further, Eysenbach and Till (2001) classify online research into passive and active. The first is “passive analysis” where the researcher does not necessarily involve him or herself in the research. The study focus is to gather information from websites or online discussion boards or forums. The second type of research online is labeled as “active analysis” where the researchers engage with participants in an attempt to use the Internet for what is considered traditional research such as online interviews or online focus groups (p. 1103). In the past, interviews were either performed face-to-face or via telephone; nowadays, it is also possible to complete interviews through the Internet via software such as Skype, Zoom, ooVoo, or WebEx among others. Researchers have discussed how face-to-face interviews did not lack nonverbal cues in contrast to a telephone interviews and pointed out the benefits of using Skype for qualitative research, concluding that with the use of Internet software, it is possible to overcome the shortcomings of telephone interviews (Hanna, 2012; Holt, 2010). Proposers of using Skype for interviewing in research agree that confidentially is a participant’s right and argue that Skype encrypts messages. Microsoft’s private policy regarding Skype is as follows: Skype lets you send and receive voice, video and instant message communications. As part of providing these features, Microsoft collects, uses and shares personal data, including data about your communications. (Microsoft Privacy Statement, para 24) According to Microsoft data is only collected with the purpose of informing the usage of their products. This information is also bought from private companies. However, different countries may regulate communications differently, such as the USA and China, where law enforcement is able to tap into communications (Gough, 2007).

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INTERNET ETHICS Holge-Hazelton (2002) argued that the Internet should be regarded as an extension of the existing interaction between the participant and researcher. For this reason, extending the current ethical practices to the Internet is more reasonable than developing new ones. As early as 2001, Eysenbach and Till wrote on issues regarding the ethical concerns of conducting research on Internet communities concluding that the most difficult tasks for researchers is identifying which spaces of the Internet are public and which are private. Concluding that it is the responsibility of the Institutional Review Board to develop protocols and to carefully review research that utilizes the Internet for research. Wilkerson, Iantaffi, Grey, Bockting, and Rosser (2014) discuss the decision making behind opting for an online study in contrast with a more traditional method. Budget may be a key factor in deciding what form of data collection is adopted. Online data collection may, in theory, be less expensive than collecting data face-to-face. The assumption is, of course, that the online software used to collect data is less expensive than site visits, refreshments, and renting office space. For example, just as online research enables access to populations difficult to reach, it may also alienate specific populations. For example, populations that have limited typing skills, or dyslexia, visual impairments (Clark, 2007). To Clark’s consideration, I would add that the use of technology may also prevent older generations, people who are poor, as well as, people who speak English as a second language may be faced with two barriers that may prevent them from participating in research language and technology.

WHAT ARE THE IRB (RESEARCH ETHICS BOARD) GUIDELINES? Are researches aided by having Institutional Review Board (IRB) guidelines, and what does the American Educational Research Association (AERA) Code of Ethics suggest? Penn State University website addresses the use of technology and offers guidelines: The Institutional Review Board (IRB) believes that computer-and Internet-based research protocols must address fundamentally the same risks (e.g., violation of privacy, legal risks, psychosocial stress) and provide the same level of protection as any other types of research involving human participants (para 2). Further, the Penn State University website outlines three key points the researcher should address and they are (a) informed consent, (b) confidentiality, and (c) potential risks. The IRB guidelines consist of four major categories when

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it comes to the use of computer and Internet in research (a) subject recruitment, (b) data collection, (c) server administration, (d) data storage and disposal. Further, guidelines for informed consent are broadly defined. Researchers may look into their discipline’s code of ethics when seeking guidance regarding the use of technology and the Internet for research. AERA’s most recent Code of Ethics outlines the storage of confidential data: Education researchers are attentive to the problems of maintaining confidentiality and control over sensitive material and data when use of technology, such as computer networks, may open their professional, scientific, and scholarly communication to unauthorized persons or inadvertent disclosure. (2011, p. 150) Regarding the use of recording technology, the AERA Code of Ethics states that researchers should obtain informed consent when “photographing, videotaping, filming, or recording them in any form” (p. 152). More importantly, the code states that these recordings are not expected to cause harm to the participant. These guidelines could easily be extended to online software such as Skype. Due to the lack of specifics from both the IRB guidelines and the AERA code of ethics extending the basic concepts of not harming participants and protecting data confidentiality seem to be the approach researchers are to take.

CONCLUSION When is it correct to use the Internet for qualitative research? The answer is simple: When it is appropriate. There should be a more comprehensive manner of obtaining consent through the Internet, further, researchers should be more aware of the complexities of the Internet. While guidelines may be offered by each institution, they may not be designed for qualitative research further because of the singularity of qualitative research the design of the study may be unique and thus lack of guideless. Each study should be address in a case by case basis. Perhaps this does not sound too different from what is being done nowadays, however, the lack of understanding regarding research through technology is unacceptable nowadays. Though the IRB guidelines for computer, technology, and Internet research are broad; the researcher is not without assistance when conducting research using Internet or technology. As I wrote this paper, I was able to find very specific guidelines, whether they were for conducting research using forums or using texts to conduct research with adolescents. The stepping stones to a more comprehensive guide for qualitative research is already available.

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REFERENCES Barak, A., Hen, L., Boniel-Nissim, M., & Shapira, N. A. (2008). A comprehensive review and a meta-analysis of the effectiveness of internet-based psychotherapeutic interventions.  Journal of Technology in Human services,  26(2–4), 109–160. doi: 10.1080/15228830802094429 Changrani, J., Lieberman, M., Golant, M., Rios, P., Damman, J., & Gany, F. (2008). Online cancer support groups: experiences with underserved immigrant Latinas. Prim Psychiatry, 15(10), 55–62. Retrieved from http://cat.inist.fr/?aModel e=afficheN&cpsidt=20827455 Clark G. (2007). Going beyond our limits: Issues for able and disabled students. Journal of Geography in Higher Education, 31(1), 211–218. doi: 10.1080/03098260601033134. Creswell, J. W. (2007). Qualitative enquiry and research design: Choosing among five approaches. Thousand Oaks, CA: Sage. Deakin, H., & Wakefield, K. (2014). Skype interviewing: Reflections of two PhD researchers. Qualitative Research, 14(5), 603–616. doi: 10.1177/1468794113488126 Dedding, C., van Doorn, R., Winkler, L., & Reis, R. (2011). How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients. Social Science & Medicine, 72(1), 49–53. doi:10.1016/j.socscimed.2010.10.017 Eysenbach, G., & Till, J. E. (2001). Ethical issues in qualitative research on Internet communities. BMJ, 323(7321), 1103–1105. Gough, M. (2007). How dangerous is Skype? Retrieved from http://www.computer world.com/article/2543670/networking/how-dangerous-is-skype-.html Hanna, P. (2012). Using Internet technologies (such as Skype) as a research medium: a research note. Qualitative Research, 12(2), 239–242. Holge-Hazelton, B. (2002). The Internet: A new field for qualitative inquiry? Forum: Qualitative Social Research, 3(2), Art. 15. Retrieved from http://www.qualitativeresearch.net/index.php/fqs/article/view/854/1856 Holt, A. (2010). Using telephones for narrative interviewing: A research note. Qualitative Research, 10, 113–112 Janghorban, R., Roudsari, L., & Taghipour, A. (2013). Skype interviewing: The new generation of online synchronous interview in qualitative research. International Journal of Qualitative Studies on Health and Well-Being, 9, 24152–24152. Knaevelsrud, C., Brand, J., Lange, A., Ruwaard, J., & Wagner, B. (2015). Web-based psychotherapy for posttraumatic stress disorder in war-traumatized Arab patients: randomized controlled trial.  Journal of Medical Internet Research,  17(3). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385175/

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Kuester, A., Niemeyer, H., & Knaevelsrud, C. (2016). Internet-based interventions for posttraumatic stress: A meta-analysis of randomized controlled trials.  Clinical Psychology Review, 43, 1–16. doi: https://doi.org/10.1016/j.cpr.2015.11.004 Marwick, A. E. (2014). Ethnographic and qualitative research on Twitter (pp. 109–122). Twitter and society. New York: Peter Lang. Markham, A., Buchanan, E., & AoIR Ethics Working Committee. (2012). Ethical decision-making and Internet research: Version 2.0. Recommendations from the AoIR Ethics Working Committee. Final Draft, Association of Internet Researchers. Mason, D. M., & Ide, B. (2014). Adapting qualitative research strategies to technology savvy adolescents. Nurse researcher, 21(5), 40–45. Microsoft Privacy Statement. (2016). Retrieved from https://privacy.microsoft.com/ en-us/privacystatement Patton, M. Q. (2002). Qualitative research and evaluation methods. Thousand Oaks, CA: Sage. Penn State University. (2016). IRB Guideline X—Guidelines for computer- and internet-based research involving human participants. Retrieved from http://www.research .psu.edu/policies/research-protections/irb/irb-guideline-10 Pretlow, R. A. (2011). Addiction to highly pleasurable food as a cause of the childhood obesity epidemic: a qualitative Internet study. Eating Disorders, 19(4), 295–307. http://dx.doi.org/10.1016/j.socscimed.2010.10.017 Tech Blog. (2010). The incredible growth of the Internet since 2000. Retrieved on February 7th, 2016 from http://royal.pingdom.com/2010/10/22/incredible-growthof-the-Internet-since-2000/ Wilkerson, J. M., Iantaffi, A., Grey, J. A., Bockting, W. O., & Rosser, B. S. (2014). Recommendations for Internet-based qualitative health research with hard-to-reach populations. Qualitative health research, 24(4), 561–574.

APPENDIX F

REFLEXIVE COURSE EXPERIENCES 1. History Alive: Members of the course form small groups and choose one of the historical human research ethics atrocities referenced in Chapter 2. The core of this experience is to consider how best to make the history come alive for the rest of the class in a short presentation. Some ideas follow. a. Find documentary footage on-line about the event. b. Identify nation leaders who have spoken about studies such as the Tuskegee or Guatemala Syphilis Study. Share their words with the class. c. Locate memos about research and share these with the class. For example, prison research has memos from the actual researchers in the study. d. Find information on what reporters said who broke the news on research studies. 2. Ripped From the Headlines: Have each member of the classroom community bring a hard copy of a current event from the news regarding the research ethics topic of emphasis or their current research (e.g., immigration, children, homeless) to class. Explore the current event pieces choosing one of the following activities. The instructor should also bring in a copies of events for students. The instructor may wish to collect copies of the events for future use. Online instructors can have students post links or copies for course use. a. Meet in small groups. Each student should briefly share a synthesis of their event. Possible discussion questions follow.   i. How do the writers portray the topic of interest?       ii. How might students agree or disagree with the writer’s perspective? iii. What are similarities and differences between portrayal of events?     iv. What potential research ethics issues are identified?     v. How might ethics issues be negotiated? 247

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b. Post current event clippings around the room. Provide sticky notes. Have class members move through the room posting comments about each clipping in relation to the emphasized topic. What potential research ethics issues are identified? 3. Words Matter: Have classroom members bring in scissors, glue, newspaper, magazines, rulers, paper for a collage surface, or hard flat edges to tear newspaper along, construction paper or poster board. a. Identify a research ethics topic of interest. Cut or tear out words that the media uses to represent these groups. Create a collage of the words. Post the collages around the room for group discussion 4. Personal Immigration History: Choose one of the following activities. After these are completed meet in a small group to present an overview of what you found. a. Interview an older family member in person, by phone or webcam about her or his family immigration history. Record and possibly transcribe the interview. What was learned? b. If the student is able to go to their home find out if there are any family artifacts such as letters, diaries, genealogy books. If so, look through these and write a review to share with the class about what was learned. c. If students cannot access their family read through a history of the racial/ethnic immigration history similar to their family. d. Some people have a clear understanding of their own immigration history. For example, I was taught my family immigration history both at home and formally in school. If this is the case either try to research how your immigration impacted others or choose a group that you know little about and research their immigration. 5. Expert Panel: Assemble a panel of experts on the group one is considering, be sure to include as many members with the identities of interest as possible. Each course member should come prepared with questions for the panel and the course instructor may wish to email some questions ahead of time for members to consider. The discussion would center on advice for how to ethically conduct research with the group of interest and possible areas of ethical note. 6. Movie Time: Viewing a movie as a class or assigning it and then discussing it when you regroup virtually or in person can be a highly valuable experience. If you meet in real time popcorn or snacks makes the event a fun time. Movies I have used with success include Babies (www.focusfeatures.com/babies) and Carts of Darkness

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(www.nfb.ca/film/carts_of_darkness/). Babies helps researchers think about a group that does not have a voice as we conventionally think of voice, literally. The documentary is engaging and light hearted, yet has elements that will provide ample opportunity for rich discussions. Carts of Darkness is a documentary of men who are homeless who have turned bottle collecting in grocery carts into an extreme sport racing mounted on carts down steep hills. The concept of the ethics involved in recording risky behavior as a part of research can be discussed. 7. Debate: Members of the course should choose a position on an ethics topic or dilemma. Members are put in two groups according to their decision. I typically have to ask some students just to choose the side they align with most for the purpose of the activity since they are able to see both side of the issue. The groups then must debate the opposite of the position they choose. Possible debate topics follow. a. Should monetary compensation be offered to potentially vulnerable participants? b. Does the Internet have ethical issues that are unique in human research? c. Do research ethics boards play an important role in protecting human subjects? 8. What’s in Your Purse?: This activity helps people to think about their own identity. Ask classroom members to look in the bags they brought to class, wallets, or their pockets and choose some items that represent them to share with a small group of classmates. What meaning is there in the items we carry around with us daily? What do these items say about their identity? 9. Speed Discussion: This activity was created from the idea of speed dating. Form two circles one within the other. Course members each share their perspective on a topic and then the outer circle rotates one person clockwise and they do so again. Use a timer and keep the time short, 1–3 minutes. Possible topics follow. a. What is the research ethics areas you are considering writing about? b. What is a key part of your research ethics stance? c. What are some things a researcher would want to know about you in order to make the research process more responsive? d. Is there a group of people who are usually not vulnerable in research? Why or why not? e. Why or why not might some people be more vulnerable in research?

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10.  Doodle It: Doodling may be seen as “making spontaneous marks with your mind and body to help yourself think” (Brown, 2014, p. 11). I would like to thank, Alaa Zeyab (2017), for introducing me to the idea of formally doodling in education. Alaa was studying the concept as part of a pilot study in a qualitative research course I teach. When a student is studying a pedagogical idea, I like to try it out in class as appropriate to the course content. Alaa helped me develop the activity and pilot it with two of my courses. Doodling involves three senses: listening to the lecture (auditory learning), drawing (kinesthetic learning), and creating a picture (visual learning) (Brown, 2014). a. Clear your workspace and doodle (informal drawing) instead of taking notes during this portion of the class. b. Pair up with one person and share about your doodle. Identify one concept that is not clear from the lecture and see if you can clarify it between you. c. Prepare a question for the instructor if there is any remaining confusion. 11. Ethics Vita: Develop a section of your vita that exhibits your commitment to ethical human research. If you do not have formal items to enter there yet, consider the following. a. Take a formal course on research ethics. b. Attend research ethics seminars at your university or conferences. c. Better yet, present on ethics when you are at the conference. d. If your university does not have resources available yet, develop them by organizing a student interest group. e. Take training sessions offered online. See the resources at the end of chapters in this book. f. Receive a formal certificate from a group such as CITI or NIH by taking their training modules. 12. Student Research Ethics Interest Group: If your university does not have many resources yet, consider developing a group of students to start to generate ideas and resources in these areas. 13. Word Clouds: Digitally provide or ask course members to bring with them a group of words from a data set or article on the human ethics topic of interest. Upload the words into a word cloud website such as Wordle or Tagxedo to create word displays.

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14. Interview a Researcher: Choose a seasoned researcher from your discipline or one who researches potentially vulnerable people or sensitive topics to interview. a. Record the interview. b. What areas does the researcher have the most concern about ethically? c. What stories of research dilemmas does the researcher share? d. What would the researcher recommend be part of an aspirational research ethics stance? e. Consider presenting a research poster or writing an article, perhaps with the researcher on the information gained. 15. Many Voices: For all of the suggested activities if the class forms one voice of thought provide opportunities for them to think from other perspectives. So for example, if the class is supportive of immigrant reform they should try to look at this issue from another perspective. 16. Human Research Ethics Day: Develop a day when human research ethics will be emphasized. Consider including animal and other types of research also. This may start at a unit level and move to a campus wide day. Many universities have a research day or week. Having one day during this week that emphasizes ethics would be powerful experience. a. Develop posters to advertise the day. b. Have a poster session with submissions on different research ethics issues.

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INDEX

Abu-Lughod, L., 193 Access research on children and, 105 research on immigrants and, 135–137 research on people who are homeless and, 177–179 Active analysis, 242 Addams, Jane, 7 Adichie, C. N., 29 Adult memory, childhood researchers and, 101–103 Advocacy work, immigrant research and, 137 Aesthetic research representation, 159–162 Africa, Horn of, 80, 117, 125, 133, 163, African Americans, Tuskegee Syphilis Study and, 46–51, 64, 220, 227–228 Ageism in research, 230 Alderson, P., 108 Aldridge, J., 203 Alien, to describe undocumented people, 127 Allen, Quaylan, 191, 193–195, 200 Allocational vulnerability, 20 Alternative research ethics, 8 American Anthropological Association ethical code, 25 American Educational Research Association (AERA) Code of Ethics, 25, 29, 243, 244 American Indian Law Center, 222 American Psychological Association ethical code, 25 American Sociological Association ethical code, 25 Andersen, R., 170 Anecdotes, aesthetic research representation and, 160

Anonymity confidentiality and, 82 Internet and, 201 meaning of term, 157 research with people of diverse sexual orientation and, 157 Anonymizing data, 202 AoIR (Association of Internet Researchers), 201, 205–206 App, Ethical Decision Making, 26–27 Arabic Gulf region, use of consent forms in, 80 Arangua, L., 170 Artifact analysis, 174 Aspirational ethics creating an aspirational research ethics stance, 25–28 developing, 7–8 exemplar of an aspirational ethical stance, 29–39 Assent, child, 106. See also Informed consent Asset based framework, of Culturally Responsive Relational Reflexive Ethics, 37 Asylum seekers, 122 Auditory learning, 250 Auto-driven photo-elicitation, 187 Auto-driving, 187 Babies (film), 248–249 Back stories of research, 182 Banks, M., 159, 189 Bauder, H., 127, 128 Bayer, A., 230 Becoming, researcher, 8, 211 Culturally Responsive Relational Reflexive Ethics and, 39 immigrant research and, 132

277

278   Ethics in Social Science Research research on people who are homeless and, 182 research with people with diverse sexual orientation and, 144, 163 visual and virtual research and, 188 Behar, R., 85 Being, ethics of, 8 Being with children, 114 Belmont principles, comparison of discipline ethical codes to, 25 Belmont Report, 22, 58, 220, 228 Beneficence, institutional review board requirements and, 58–59 Bereaved, use of real name and, 84 Beverley, J., 15, 95 Big data, 200 Bilger, V., 136 Bioethical taxonomy on potential vulnerability in participants, 19–20 Biomedical perspective, of institutional review board, 60 Birman, D., 132, 137 Bockting, W. O., 243 Bucart, J. M., 71 Buchanan, E., 199–200 Bureaucracy, of institutional review boards, 61 Burris, M. A., 194 Canada child assent to researchers in, 106 research ethics boards in, 64–65 vulnerable research populations in, 18 Capable and competent child, 98–99 Capable and competent yet vulnerable, 20–24 people who are homeless as, 172–173 queer narrative of, 155–156 Care, being relational and, 34 Care response, 32 Caring ethics, 26 Carts of Darkness (film), 248–249 Carver, George Washington, 50 Castro, Joaquin, 125, 127 Certificates of confidentiality, 82–83

Change agent, Culturally Responsive Relational Reflexive Ethics and, 37 Chibnall, J., 19, 230 Child/adult relationship, 95–96 Childhood, concept of, 95–96, 97–98 Childhood amnesia, 102 Childhood researchers methodological positioning to child, 103–104 suggestions for, 104–114 Children, ethical research with, 95–116 always Othered, 96, 101, 114 being with children, 114 child assent to research, 106 children as experts, 112–113 children as Other, 17, 100–101 contemporary images of the child, 97–100 ethical considerations, 105 ethical dilemmas, 113 innovative research methods, 108–112 intersubjectivity and, 107–108 nature of adult memory and, 101–103 reflexive stance and, 107 researchers’ methodological positioning to child, 103–104 suggestions for early childhood researchers, 104–114 Child rights, 98 Chiumento, A., 134 Christensen, H. P., 101, 104, 108 Christians, C. G., 8 Clark, A., 111 Classism, contemporary Western research ethics and, 44 Clinton, Bill, apology for Tuskegee Syphilis Study, 48–51 Clough, P., 81 Co-construction, Culturally Responsive Relational Reflexive Ethics and, 38 Coercion, research on people who are homeless and, 179–181 Cognitive vulnerability, 19 Collaborative dialogue, 112 Collage inquiry, 187 Collective voice, 159–160

Index  279

Colom, Alvaro, 46 Common Rule, 58 Internet research and, 199 updating, 5, 62–64 Community-based, participatory research models (CBPR), 222 Composite voice, 159–160 Comstock, G., 4 Confessional tales, aesthetic research representation and, 160 Confidentiality, 81–88 anonymity and, 82 certificates of, 82–83 children and, 105 meaning of term, 157 post-interview confidentiality form, 87 pseudonyms, 83–84 pseudonyms, current use of, 84–85 pseudonyms and power, 85–87 real names vs. pseudonyms, 87–88 research with people of diverse sexual orientation and, 157, 159 Consent, 72–81 children and, 105, 106 cultural aspects of consent, 79–81 meaningful understanding of consent, 72–74 processed consent, 78–79 process responsiveness, 79 research on people who are homeless and, 177 simple language and, 74–76 witnessed verbal consent, 76–78 women, 80, 81, 135 Consequentialist ethics, 7 Contemporary Western research ethics, 44–58 Cool Hand Luke (film), 52 Copyright laws, Internet and, 201 Correcting Hurtful and Alienating Names in Government Expression (CHANGE) Act, 127 Corsaro, W., 21, 98, 104 Covenantal ethics, 26 Cox, Gwendolyn, 49 Craigslist, 179

Critical aside, 161 Critical tales, aesthetic research representation and, 160 Cross-cultural researchers informed consent and, 72 need for deep knowledge of dissimilar group, 135 Cultural aspects of consent, 79–81 Culturalized explanations, Othering and, 15 Culturally Responsive Relational Reflexive Ethics (CRRRE), 8, 13–41 adhering to, 163 becoming and, 163 creating an aspirational research ethics stance, 25–28 creating ethical research stance, 28–29 cultivating practices of, 38–39 eight strands of, 35–39 exemplar of, 29–39 Other in research, 13, 14–17 participants as capable and competent, yet vulnerable, 20–24 research on people who are homeless and, 182 vulnerable label in research, 17–20 Culturally responsive teaching, 35, 36 Culturally responsive visual and virtual research, 204–206 Culturally sensitive (responsive) and culturally contextualized research ethics, immigrant research and, 134–135 Cultural responsive ethical research methodology, use of pseudonyms and, 88–89 Cultural responsiveness (CR), 30 Culture, in culturally responsive ethics, 32 Cutler, John C., 46 Cyber ethnography, 187 Data collection modes, in Culturally Responsive Relational Reflexive Ethics, 38 Data proliferation, 202–203

280   Ethics in Social Science Research Data security guidelines for, 203–204 virtual research and, 202–204 Data storage, 244 Davis, J. M., 97, 98, 104, 107, 108 de Beauvoir, S., 14 Deferential vulnerability, 19 De-identifying data, 202 de Lauretis, Teresa, 153 DeMarrais, K. B., 11, 182 Denzin, N. K., 8, 15, 108–109, 112, 152 Deontological ethics, 7 Department of Housing and Urban Development (HUD), 170 Diagnostic and Statistical Manual (DSM), 147, 148 Dickler, H. B., 75 Ding, S., 96 Discipline ethical codes, 7 compared to Belmont principles, 25 See also individual disciplinary organizations Dissemination of results, informed consent and, 74 Distrust, immigrant research and overcoming, 135–136 Diversity Immigrant Visa Program (DV), 122, 124, 128–129 Dockett, S., 99, 109 Doner, Sam, 49 Dorner, L. M., 104, 113 Drawing, 111 Eby, Ann Kathryn, 28, 102 Eby, Omar Eder, D., 100, 111 Eisner, E. W., 189 Ellis, C., 9, 30, 33, 79, 83 Emigrants, defined, 126 Employment-based immigration, 121, 123 English readability calculator, 75 Erasistratus, 236 Eshelman, Dave, 52–53 Essentialized explanations, Othering and, 15

Estrada, Samantha, 241–246 Etherington, K., 35 Ethical considerations in research on children, 105 in research on immigrants, 132–137 in research on people who are homeless, 175–182 Ethical Decision Making app, 26–27 Ethical dilemmas, with children, 113 Ethical imperialism, institutional review boards and, 60 Ethically important moments, 26 Ethical research guidelines, 22–23 Ethic of caring, 30 Ethics. See also Aspirational ethics; Culturally Responsive Relational Reflexive Ethics (CRRRE) of being, 8 caring, 26 covenantal, 26 defining, 3–4 deontological or consequentialist, 7 feminist, 26 Internet, 243 narrative, 26 in practice, 26 procedural, 7, 25 reasons researchers should be concerned about, 4–5 reflexive, 34–35 relational, 26, 30, 33–34 situational, 26 virtue, 26 Ethics police, institutional review board as, 60 Ethics review, 5–6. See also Research ethics boards (REBs) Ethnic labels, 27–28 Ethnodrama, 160 Ethnography with LGBTQQ+ university students, 152–155 salvage, 220–221 European Union child assent to researchers in, 106 homelessness in, 169

Index  281

Every Queer narrative, 149, 153, 156 Experts, children as, 112–113 Eysenbach, G., 242, 243 Facebook, 200 Families, increase in homelessness among, 170 Family-sponsored immigration, 121 Farmer, J., 33 Fear, undocumented people and, 128 Feminism, being relational and, 34 Feminist ethics, 26 Feminization of homelessness, 170 Fine, G. A., 96, 104, 107 Fine, M. Fingerson, L., 100, 111 Finlay, L., 34, 107 Fisher, C. B., 145 Focus groups, 28, 37, 60, 111–113, 192, 201–202 Food and Drug Administration (FDA), 238 Formal tales, aesthetic research representation and, 160 Forster, E. M., 10 Friendship groups, 111 Frith, L., 134 Gamson, J., 153 Gates, M. F., 182 Gay tales, aesthetic research representation and, 160 Gelberg, L., 170 Gerontology, future of aging and, 228–229 Ghosh, S. K., 236 Gift cards, as research compensation, 180 Gilliam, L., 7 Gilligan, C., 34 Gold, S., 195–196 Goredema-Braid, B., 158 Gotved, S., 199 Gough, B., 34, 107 Graduate student papers ethics should be about protecting participants, not the research institution, 235–240

older age is a chronological part of life, not vulnerability, 227–233 research with Native American communities, 219–225 use of Internet and Skype in qualitative research, 241–246 Graue, M. E., 103, 105, 110 Great Britain, vulnerable research populations in, 18 Greece, Syrian migrants and, 121 Grey, J. A., 243 Griffin, Krista, 109–110, 190–191 Grimen, H., 18, 60 Guatemala Syphilis Experiment, 45–46 Guillemin, M., 7 Guinea Pigs Get Paid (GPGP) website, 179 Gunn, J. A., 176 Hadjistavropoulos, T., 88 Haggerty, K. D., 237 Hailu, Tekleab E., 129 Halfie, 193 Hallett, R. E., 178, 180 Halperin, D., 153 Hamilton, Boni, 67 Haney, Craig, 54 Hanson, Kirk, 26 Harcourt, D., 105 Hard-to-reach populations, 17 Harper, D., 195–196 Hauk, S., 33 Heggen, K., 18, 60 HeLa cells, 45 Hendon, Ernest, 49 Hendon, North, 49 Hernández, J., 122 Herophilus, 236 Heterosexism, contemporary Western research ethics and, 44 Hertz, R., 11 Heywood, C., 95–96, 97 Hidden population, 17, 171, 177 Highly mobile, 168, 169 Hippocratic Oath, 237 Hispanic label, 27

282   Ethics in Social Science Research Historical queer research narratives, 150–152 Hitchens, Christopher, 125 Holge-Hazelton, B., 199, 201, 243 Holmesburg prison studies, 220, 228 Homeless, defined, 167–168 Homeless, ethical research with people who are, 167–185 access and, 177–179 compensation vs. coercion and, 179–181 Culturally Responsive Relational Reflexive Ethics and, 182 current contexts of homelessness, 169–172 ethical considerations, 175–182 people who are homeless as vulnerable, 171 people who are homeless as vulnerable yet capable and competent, 172–173 power and, 175–177 research contexts, 173–175 Homeless Hub, 184–185 hooks, bell, 204–205 Hookway, N., 200 Horn of Africa, research on immigrants from, 80, 125, 129, 133 Howard, Carter, 48 Howell, J. T., 159 Human research ethics course, 6, 213–217, 247–251 Human subject, defining, 199–200 Human Subject Research regulations. See Common Rule Humphreys, L., 45 Hurst, A. L., 84, 86 Hurston, Zora Neal, 4 Iantaffi, A., 243 Iltis, A. S., 19, 230 Immigrants capable and competent, yet vulnerable, 133 defined, 126 terminology for, 126, 127

Immigrants, ethical research with, 117–141 access and, 135–137 authors as immigrants and, 123–124 culturally sensitive and culturally contextualized research ethics, 134–135 current immigration contexts, 120–121 diversity immigrant visa lottery, 122, 124, 128–129 ethical considerations for, 132–137 ethical framework for, 122 immigrant status, 121–122 migration, 119–120 people who are undocumented, 126–128 reasons for, 118–119 reflexivity and, 133–134 research contexts, 124–126 sojourner immigrants, 130–132 Impressionist tales, aesthetic research representation and, 160 Inclusive democratic deliberation, 112 Inescapably Othered, 17 LGBTQQ+ people as, 151, 163–164 people with diverse sexual orientation and, 144 Infantile amnesia, 102 Informed consent, 72–81 children and, 105, 106 cultural aspects of consent, 79–81 meaningful understanding of consent, 72–74 processed consent, 78–79 process responsiveness, 79 research on people who are homeless and, 177 simple language and, 74–76 witnessed verbal consent, 76–78 women and, 80, 81, 135 Infrastructure vulnerability, 20 Inside Stories (DeMarrais), 11 Inside stories of research, 182 Institutional Review Board (IRB) Guidebook, 228 Institutional review boards (IRBs), 5, 6, 29, 58–64

Index  283

Common Rule changes, 5, 63–64 compensation guidelines and, 181 critique of standards and regulations, 237–238 current, 60–62 future, 62–63 guidelines, 243–244 history of, 58–60 informed consent and, 72, 74 perception of, 43 regulations, 7 research on LGBTQQ+ community and, 145 research on LGBTQQ+ youth and, 158 resources for, 61–62 studies on aging and challenges with, 230–231 vulnerable populations and, 18, 22–23, 144, 145 International students, as sojourners, 130–132 Internet. See also Visual and virtual ethical research as a culture, 192–193 public vs. private and, 200–202 real names vs. pseudonyms and, 87–88 use in qualitative research, 241–246 Internet communication, in research, 111 Internet ethics, 243 Internet research, 192. See also Visual and virtual ethical research Intersubjectivity, childhood research and, 107–108 Interviews of children, 111 Iran, informed consent in, 81 Irregular people, 127 Irvine, J. M., 86, 145, 146 Israel, M., 4–5, 6, 8, 26, 64, 80 iTunes U, Research Ethics Lecture Series, 64 Jackson, George, 57 Jacob, S. A., 62 Janesick, V. J., 109 Jewish Cancer Medical study, 45 Johnson, J. L., 14, 16

Jointly told tales, aesthetic research representation and, 160 Journaling, researcher, 38, 182 Judicious vulnerability, 19 Juritzen, T. I., 18, 60 Justice, institutional review board requirements and, 59–60 Kavanagh, E., 82 Kay, H., 113 Kellett, M., 96 Key, George, 49 Kilgard, A. K., 160 Kincaid, Tyler, 21, 22–24, 44 Kinesthetic learning, 250 Kinkaid, Tyler, 63, 174 Kipnis, K., 19 Knaevelstud, C., 242 Kong, T., 150 Krall, Naomi, 28–29 Kress, T. M., 236 Krumer-Nevo, M., 17 Labels, for immigrants, 117–118 Lacks, Henrietta, 45 Lammers, E., 137 Landram, Suzanne, 235–240 Language of consent forms, 74–76 Larkins, Randy, 201–202 Lather, P., 10, 160 Laud Humphreys’s Tea Room Trade, 45, 237 Lawrence-Lightfoot, S., 33 Lebanon, research ethics boards in, 65 Legal status of immigrants, 121–122 Lesandrini, J., 19, 230 Lesbian, gay, bisexual, transgender, queer (LGBTQ) community. See Sexual orientation, ethical research with people with diverse Lewis, A., 111 LGBTQQ+ university cultural center, 143–144, 153–154 Liamputtong, P., 41, 109, 135, 157, 171, 229 Lincoln, Y. S., 6, 15, 62, 108–109, 112

284   Ethics in Social Science Research Literary tales, aesthetic research representation and, 160 Little Albert, 45 Lyman, S. M., 15, 151 Mabaraza, 106 Macrosocial child, 98 Maharaji, B., 122 Mahoney, D., 150 Mandatory ethical codes, 7 Mandell, N., 104 Mapping, 111 Mark, John, 52, 53 Markham, A. N., 199–200 Markkula Center for Applied Ethics, 26–27, 119 Marsh, K., 33 Martyr’s Mirror (book), 123 Martyr-target-victim narrative, 155 Marwick, A. E., 241 Maslach, Christina, 56–58 Mattingly, C., 74 Mauthner, M., 96, 103, 108, 111, 112–113 Medical vulnerability, 20 Medina, J., 203 Meisinger, E. B., 109 Memory, childhood researchers and adult, 101–103 Mennonites, 123, 188–189 Merriam Webster’s, 3 Methodolatry, 109 Methodological Mexico/U. S. border, 120, 133–134, 140 Microsoft, Skype privacy policy, 242 Migrants, defined, 126 Migration, 119–120. See also Immigrants, ethical research with Milgram, Stanley, 45, 237 Miller, M., 229 Mills, D., 238, 239 Minimal ethical codes, 7 Minimalist ethical codes, 25–26 Moch, S. D., 182 Model Tribal Research Code, 222 Molyneux, C., 33

Monetary compensation, research on people who are homeless and, 179–181 Monetary reciprocity, immigrant research and, 136–137 Monroe, Christopher, 49 Montage, aesthetic research representation and, 160 Moore, L. W., 229 Mosaic Approach, 111, 187 Moss, Frederick, 49 Ms. Evers Boys (film), 48 Multivocal voice, 159–160 Murphy, E. J., 119 Musoba, G. D., 62 Mustanski, B., 145, 158 Naming process, for pseudonyms, 89 Narrative, 97 Narrative apercu, 10–11 Narrative ethics, 26 Narratives aesthetic research representation and, 160–161 aesthetic research representation and fractured, 160 apercu, 10–11 research on people who are homeless and, 174 National Alliance to End Homelessness, 170 National Association for Professional Gerontologists (NAPG) Code of Ethics, 231 National Association of Education for Young Children, 29 National Bioethics Advisory Commission, 51 National Bioethics Advisory Committee, 19 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 58 National Research Act (1974), 220 Native Americans

Index  285

research with, 219–225 tribal research policies and protections, 221–222 Nespor, J., 111 Netnography, 187 New Childhood Sociology, 21, 98 Newmann, A. M., 33 Nguyen, J., 122 Noblit, G. W., 71 Noddings, N., 30, 32 Nonstatus migrants, 126 Nooe, R. M., 171 Nuremberg Code, 45, 220, 227 Nuremberg trials, 45 Nutbrown, C., 100, 108 Obama, Barack, 46 Obedience study, Milgram’s, 45, 237 Observational data, 174 Odendahl, T., 159 Office for Human Research Protections (OHRP), 228 Ogletree, C., Jr., 121 O’Kane, C., 79, 105, 111, 113 Olansky, Sidney, 47 Older age, vulnerability and, 227–233 Online research. See Visual and virtual ethical research Oral historians, use of real name and, 84 Orientalism, 15 Other children as, 100–101 knowing self and knowing, 17 LGBTQQ+ people as, 150–152 in research, 13, 14–17 understanding of self in concert with, 107 Othered, children as always, 96, 101, 114 Othering, 14–17 Pachana, N. A., 230 Paechter, C., 200 Parker, L. M., 119 Participant photography, 193–195 Participants

as capable and competent, yet vulnerable, 20–24, 155–156, 172–173 of color, use of real name and, 84 concept of, 13 protecting, 235–240 vulnerable (see Vulnerable designation in research) Participatory decision-making, 112 Passive analysis, 242 Paternalism, vulnerable as label and, 19, 21 Pathological tales, aesthetic research representation and, 160 Patterson, D. A., 171 Payment in kind (PIK or PinK), research on people who are homeless and, 179–181 Plain language, 74–76 Penn State University, guidelines for Internet research, 243–244 Percival, Thomas, 237 Perry, B., 99, 109 Person first language, 175–176 Peshu, N., 33 Photobiography, 187 Photo elicitation, 38 Photo ethnography, 187 Photo feedback, 187 Photography. See also Visual and virtual ethical research Mennonites and, 188–189 participant, 193–195 as research method, 111 Photo interviewing, 187 Photo methodology, 38, 111, 189–190 Photo research, 187 PhotoVoice, 38, 187, 190–191, 193 ethical concerns about, 196–197 Pipher, M. B., 138 Plummer, K., 150 Poetry, research, 160, 161–162 Pollard, Charlie, 48 Post-interview confidentiality form, 87 Poverty, access to Internet and, 205

286   Ethics in Social Science Research Power contemporary Western research ethics and, 44 pseudonyms and, 85–87 research on people who are homeless and, 175–177 Power dynamics of age, 96 Prabjandee, Denchai, 64 Pretlow, R. A., 241 Privacy children and, 105 online, 200–202 Skype and, 242 Private space vs. public space, 200–202 Procedural ethics, 7, 25 Process consent, 78–79 Process responsiveness, 79 Professional Conduct of Physicians and Surgeons, 237 Project Camelot, 237 Pseudonyms, 83–84 in cultural responsive ethical research methodology, 88–89 current use of, 84–85 informed consent and, 75 naming process, 89 people who may wish to use real names, 84 power and, 85–87 real names vs., 87–88 virtual research and, 202 Public places, access to participants in immigrants, 136 people who are homeless, 177 Public space vs. private space, 200–202 Qatar, research ethics boards in, 65 Qualitative research, use of Internet and Skype in, 241–246 Queer asides, 161 Queer research. See Sexual orientation, ethical research with people with diverse Queer tales, aesthetic research representation and, 160–161

Queer Theory, 148–149 ethnography with LGBTQQ+ students and, 152–153 Quennerstedt, A., 105 Quinn, S., 47 Racialized explanations, Othering and, 15 Racism, contemporary Western research ethics and, 44 Rahman, A., 134 Ralphs, R., 203 Rangel, E. K., 19, 230 Ratnesar, Romesh, 52 Readability score, 75 Reading level, of informed consent form, 74, 75 Realist tales, aesthetic research representation and, 160 Receiving countries, migration and, 119–120 Recording technology, use of, 244 Reflexive course experiences, 247–251 Debate, 249 Doodle It, 250 Ethics Vita, 250 Expert Panel, 248 History Alive course, 247 Human Research Ethics, 251 Interview a Researcher, 251 Many Voices, 251 Movie Time, 248–249 Personal Immigration History, 248 Ripped From the Headlines, 247–248 Speed Discussion, 249 Student Research Ethics Interest Groups, 250 What’s In Your Purse?, 249 Word Clouds, 250–251 Words Matter, 248 Reflexive ethics, 34–35 Reflexively journaling, 38 Reflexive photography, 187 Reflexive questions, 11 Reflexive stance, in childhood research, 107

Index  287

Reflexivity in Culturally Responsive Relational Reflexive Ethics, 38 defined, 34 immigrant research and, 133–134 Refugees, 122 defined, 126 reflexivity in research on, 134 Relational ethics, 26, 30, 33–34 Research, defined, 4 Research contexts, ethical research with immigrants and, 124–126 Researcher experience, 182 Researchers. See also Becoming, researcher; Childhood researchers relationship with researched, 15 self-disclosure and, 79 stance in research with people with diverse sexual orientation, 153–154 Research ethics. See also Aspirational ethics alternative, 8 contemporary Western, 44–58 culturally sensitive and culturally contextualized, 134–135 LGBTQQ+ community and, 144–146 mobile, 63–64 vignettes, 11 virtual, 197–206 visual, 195–197 Research ethics boards (REBs), 7, 64–67 approval of monetary reciprocity in immigrant research, 137 minimalist ethical codes and, 25–26 in other countries, 64–66 in Thailand, 64 Research ethics course syllabus, 213–217 assignments, 214 course calendar, 215 course description, 213 objectives, 213–214 possible textbooks, 215–217 Research ethics history, 43–70

contemporary Western research ethics, 44–58 Guatemala Syphilis Experiment, 45–46 institutional review boards, 58–64 research ethics boards, 64–67 Stanford Prison Study, 51–58 Tuskegee Syphilis Study, 46–51 Research methods. See also Research pragmatics and methodological considerations innovative, 108–112 methodological positioning to child, 103–104 photography as, 38, 111, 189–190 Research poetry, 160, 161–162 Research pragmatics and methodological considerations, 71–72 confidentiality, 81–88 culturally responsive ethical research methodology and, 88–89 informed consent, 72–81 Research reviews. See also Research ethics boards (REBs) inadequate, 60–61 vulnerable designation and, 18–19 Resources, 11–12 for institutional review boards, 61–62 Respect, institutional review board requirements and, 59 Responsivity, aspirational ethical stances and, 30–31 Reverby, Susan M., 46 Richardson, L., 6–7 Risk, research with people of diverse sexual orientation and, 157 Riveria, Sylvia, 163 Robinson, C., 96 Robinson, L. C., 73 Robinson, L. J., 62 Rock Podcast, The Rocks Ethics Institute, 64 Rodriguez, Katrina, 27–28 Roer-Strier, D., 15 Rogoff, B., 108 Role playing, 111

288   Ethics in Social Science Research Rosser, B. S., 243 Rotimi, S., 129 Rough sleeping. See Homeless Said, E., 15 Salmon, Helen, 8 Salvage ethnography, 220–221 Sands, R. G., 15 Sandstrom, K. L., 96, 104 Saudi Arabia, research ethics boards in, 65 Schadler, Jay, 47 Schelbe, L., 78, 178, 180 Schwandt, T., 14, 15, 105, 151 Schwartz, B., 101 Scientific community codes, 25 Scott-Janda, Elizabeth, 219–225 Seeking the good, in Culturally Responsive Relational Reflexive Ethics, 38 Self-disclosure, researcher, 79 Sending countries, migration and, 119–120 Sensitive populations, 17 Sexism, contemporary Western research ethics and, 44 Sexuality research, institutional review board and, 146 Sexual orientation, ethical research with people with diverse, 143–166 adhering to culturally responsive relational reflexive ethics, 163 aesthetic research representation, 159–162 authentic queer narrative of capable and competent yet vulnerable, 155–156 confidentiality, anonymity, and risk, 157 ethical and methodological considerations, 155–163 ethnography with LGBTQQ+ university students, 152–155 historical LGBTQQ+ research narratives, 146–149

historical queer research narratives, 150–152 inescapably othered, 163–164 research ethics and, 144–146 youth, 158 Shakespeare, William, 86 Shalala, Donna, 50–51 Shaw, Herman, 48, 51 Short stories, aesthetic research representation and, 160 Shoulder-to-shoulder research, 109–110 Sidi, M., 17 Simmons, Fred, 49 Simple language, 74–76 Situational ethics, 26 Skype, use in research, 241–246 Smith, B., 4, 5, 26 Smith, Elizabeth, 227–233 Smythe, W. E., 88 Snider, A., 134 Social institutions, gaining access through, 177–179 Socio-cultural consciousness, in Culturally Responsive Relational Reflexive Ethics, 37 Sojourners, 130–132 defined, 126 Sparkes, A., 4, 5, 26 Special care for certain populations, 65 Spivak, G. C., 15 Standard Operating Protocol (SOP), 64 Stanford prison study, 45, 51–58 guard Dave Eshelman, 52–53 guard John Mark, 53 prisoner Richard Yacco, 55–56 researcher Craig Haney, 54 superintendent Philip Zimbardo, 56–57 whistleblower Christina Maslach, 56–58 Stereotypes, aging, 230 Stewart, Potter, 65 Storied lives, in Culturally Responsive Relational Reflexive Ethics, 38 Straight tales, aesthetic research representation and, 160

Index  289

Students, homeless, 169–170 Suárez-Orozco, C., 122 Suicide, LGBTQQ+ community and, 143–144 Super queer narrative, 147, 156 Syrian crisis, migration and, 121 Tadd, W., 230 Tagxedo, 250 “Tearoom” study, 45, 237 Teman, Eric, 10 Thailand, research ethics boards in, 64, 66 Third, H., 173 Third party issues, 88 Thomas, N., 79, 105, 111, 113 Thomas, S. B., 47 Thornbury, Scott, 41 Thorne, B., 101, 104 Tierney, W. G., 6, 62, 178, 180, 181 Till, J. E., 242, 243 Tol, W. A., 134 Tolich, M., 25, 44n, 59, 62, 67 Toys, communication with, 111 Tragic queer narrative, 147, 148, 155 Transgender, 163 Translated Woman (Behar), 85 Transmigrants, 126 Tribal child, 98 Tribal research policies and protections, 221–222 Trust reflexivity and, 35 relational research and, 33–34 Tuskegee Syphilis Study, 46–51, 64, 220, 227–228 interview with doctor, 47 President Clinton’s apology, 48–51 words of survivor, 48 Undocumented People, 126–128 defined, 126 reflexivity in research on, 133–134 United Kingdom homelessness in, 169 immigration to, 120

United Nations Convention on the Rights of the Child, 29, 98 on international migration, 120 United States homelessness in, 169–170 hostility to immigrants in, 121, 125 immigration to, 120 undocumented people in, 127 United States Public Health Service Guatemala Syphilis Experiment, 46 Tuskegee Syphilis Study and, 49 U.S. National Center for Homeless Education, 170 U.S. National Institutes of Health, certificates of confidentiality, 82 U.S. Office of Human Research Protection, 62–63, 64 University students ethnography with LGBTQQ+, 152–155 international students as sojourners, 130–132 Van Liempt, I., 136 Varieties of child, 98 Varieties of person, 32 Verbal consent, witnessed, 76–78 Veterans, 170, 173 Victim narrative, 155 Video, as research method, 111 Vidich, A. J., 15, 151 Villegas, A. M., 13 Virtue ethics, 26 Visual and virtual ethical research, 187–210 culturally responsive, 204–206 ethical considerations, 195 Internet as a culture, 192–193 overview, 187–189 research areas, 193–195 virtual research, 192 virtual research ethics, 197–206 visual research, 189–192 visual research ethics, 195–197 Visual anthropology, 187 Visual ethnography, 187

290   Ethics in Social Science Research Visual learning, 250 Visual sociology, 187 Vulnerable designation in research, 13, 17–20 considering all populations as vulnerable, 23–24 increased regulation around research review and, 18–19 for LGBTQQ+ community, 144–146 for older persons, 227, 229–232 for people who are homeless, 171 vulnerable child, 98–99 Vulnerable yet capable and competent, 20–24 people who are homeless as, 172–173 queer narrative of, 155–156 Wall, A., 19, 230 Walsh, D. J., 103, 105, 110 Wang, C., 194, 196 Washington, Booker T., 50 Washington, H., 59 Western research ethics, contemporary, 44–58 Wikipedia, 3 Wilkerson, J. M., 243

Willowbrook Hepatitis study, 45 Witnessed verbal consent, 76–78 sample contact information card used with, 78 script for, 77 Wittenberg, K. M., 75 Wolcott, H. F., 104, 238 Women and consent, 80, 81, 135 Wordle, 250 Wounded identity narrative, 155 Yacco, Richard, 55–56 Yanomami tribe, 237 Youth compensation and coercion in research and, 180 research with LGBTQQ+, 158 who are homeless, access to, 178 Yuan, N., 223, 224 Zapata, Angie, 161–162 Zeyab, Alaa, 250 Zimbardo, Philip, Stanford prison study, 51–58, 237 Zuckerberg, Mark, 200