Information Technology Ethics : Concepts and Practices in the Digital World [1 ed.] 9781443883023, 9781443877046

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Information Technology Ethics

Information Technology Ethics: Concepts and Practices in the Digital World Edited by

Hajer Kefi

Information Technology Ethics: Concepts and Practices in the Digital World Edited by Hajer Kefi This book first published 2015 Cambridge Scholars Publishing Lady Stephenson Library, Newcastle upon Tyne, NE6 2PA, UK British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Copyright © 2015 by Hajer Kefi and contributors All rights for this book reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the copyright owner. ISBN (10): 1-4438-7704-2 ISBN (13): 978-1-4438-7704-6

TABLE OF CONTENTS

List of Illustrations .................................................................................... vii Preface ........................................................................................................ ix Trevor Moores Acknowledgments .................................................................................... xiv Introduction ................................................................................................. 1 Hajer Kefi Part I: Concepts Chapter One ............................................................................................... 10 Ethics, Law and Robots: What Regulation? Alain Bensoussan Chapter Two .............................................................................................. 20 NetEthics: A Stakeholder Perspective Anil Aggarwal Chapter Three ............................................................................................ 30 The Grey Zone of Digital Intimacy Pierre-Michel Simonin Part 2: Practices Chapter Four .............................................................................................. 50 The Electronic Health Record: Governance, Privacy and Legal Issues Nabil Bikourane Chapter Five .............................................................................................. 71 Information Technology as a Means to Help Eliminate the Effects of Impairments Serge Bolidum and Isabelle Walsh

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Table of Contents

Chapter Six ................................................................................................ 94 IS/IT Codes of Ethics and Usage: A Comparative Analysis of Three Universities’ Codes Gilbertine Ikili Ossana and Marc Favier Chapter Seven.......................................................................................... 119 E-book Ethics: Do New Practices Implicate New Ethical Rules? Lamine Sarr and Hajer Kefi Bibliography ............................................................................................ 146 Contributors ............................................................................................. 161 Subject Index ........................................................................................... 164 Acronyms Index ...................................................................................... 166

LIST OF ILLUSTRATIONS

Tables Table 2-1: Diffusion in off-line and on-line communication ..................... 22 Table 2-1: Legal and ethical model ........................................................... 24 Table 4-1: Advantages, limits and risks inherent to DMP ......................... 62 Table 6-1: Universities IS/IT use code of conduct description overview ............................................................................................ 102 Table 6-2: Recurring themes overview................................................... 104 Table 6-3: Overview of University N°1 obligations specific to each actor ................................................................................................... 108 Table 6-4: Overview of University N°2 obligations specific to each actor ................................................................................................... 112 Table 6-5: Overview of University N°3 obligations specific to each actor ................................................................................................... 116 Table 7-1: Corpus analysis of secondary data ......................................... 130 Table 7-2: Main ethical issues identified ................................................. 133 Table 7-3: Multidimensional measurement scale .................................... 137 Table 7-4: Sample Characteristics ........................................................... 138

Figures Fig.2-1: Do’s of NetEthics......................................................................... 26 Fig. 2-2: Don’t’s of NetEthics ................................................................... 27 Fig. 4-1: DMP and the Doctor-Patient Relationship .................................. 68 Fig. 5-1: Personal conditions in an ethical context .................................... 74 Fig. 5-2: Disability as resulting from a dynamic interaction ..................... 78 Fig. 5-3: Ethics of people and institutions ................................................. 80 Fig. 5-4: Inclusion-based perspective versus integration-based perspective ........................................................................................... 81 Fig. 5-5: Digital-life-enhanced BSP .......................................................... 89 Fig. 6-1: Agreement section within university N°3 ................................. 103 Fig. 7-1: Actors of the book chain ........................................................... 123 Fig. 7-2: Ebook evolution process ........................................................... 129 Fig.7-3: Methodological Research Approach .......................................... 131 Fig. 7-4: Reading practices paper books versus ebooks .......................... 139

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List of Illustrations

Fig. 7-5: Ebook reading frequency .......................................................... 140 Fig. 7-6: Acquisition means of ebooks .................................................... 141 Fig. 7-7: Illegal downloading practices .................................................. 141 Fig. 7-8: Perception of the nature of ebooks ............................................ 142 Fig. 7-9: Perception of the book industry physiognomy.......................... 143

PREFACE TREVOR MOORES

According to the renowned physicist Stephen Hawking, if full artificial intelligence (AI) existed today we would be quickly superseded by their superior rate of evolution (Cellan-Jones, 2014). By “full AI” Hawking means the type of perceptive, emotional machine characterized by Hal in “2001: A Space Odyssey,” or the cyborgs in The Terminator movies. These machines learn, plan, and are determined to do what they need to do: Just like us. Given the speed at which these computational beings could evolve, however, it would just be a matter of time before they would create their own destinies, and we would become just another life form on the planet. We could program them to have a fail-safe in which our safety and happiness are their prime objectives, but if they were truly intelligent, they could decide that particular rule was against their own interests. We are far from such human-like machines. Surely advances in smart technology will eliminate the drudgery of everyday life and allow us more leisure time to explore the spiritual meaning of life. Whilst we may be plundering the earth’s resources and possibly damaging the environment in which we live, we are also learning how to be efficient with those resources. We are developing alternative energies, better healthcare, and enjoying a considerably higher standard of living. If we have accomplished so much over the last 100 years, the future must promise even greater advances. And, really, how bad could it be? Well, let me paint a picture with a short story, and while you read it, think to yourself what is good or bad about the events described. Imagine for a moment that we are 100 years in the future: The alarm next to your bed starts to beep and quickly drops it’s decibels as you stir and slide out of bed. You pad across the bedroom, the climate control having learned your preferences you barely feel the air: It is neither hot nor cold; it’s perfect. The light comes on as you enter the bathroom, and you stare into the mirror. The mirror stares back, detecting the level of serotonin with a scan of your eyes. The brightness of the lights are adjusted, the news headlines appear on the integrated TV, and the

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Preface chemical mix of your toothpaste is adjusted to take account of the slight puffiness in your face. A quiet tap-tap follows your motions as you brush your teeth, one tap for each circular motion. It must be circular otherwise the tap turns to a “blah!” and you have to brush that tooth again, because the mirror says so. But you are already darting through the list of emails and text messages that you received while you were asleep. The “ting!” says you have finished brushing and you can go into the shower. The water is perfect: Neither hot nor cold. You just need to stand there, arms raised, and the jets sweep across your body, foaming, rinsing, drying, and then you’re done. An email is sent to your doctor, noting a small discoloration in the freckle on your left leg. Probably nothing to worry about. Back to the mirror, the headlines talk about the weather, your itinerary for the day. It’s almost as if the whole revolves around you. Three sets of clothes appear on metal hangers. They are all dark. You wish you could wear the light blue suit, just for fun, but as if reading your thoughts the mirror reminds you that you have a meeting with the boss today. Must look your best. You’d forgotten about that. Good job your calendar is working. You dress, and that gentle voice speaks again, inviting you to breakfast. Into the kitchen you go. Laid out in pristine order is the pancakes and fruit you knew you wanted that morning. The coffee is hot and perfectly brewed. Always perfect. But you are already scanning the infotainment unit for more messages. So many ads. You wonder if you might have missed messages from your friends. You’re meeting the boss today, they must know that. You share your calendar with all your friends. They should know how important today is. But you like the video of a duck wearing a tuxedo. It’s funny. You check another one about a cat wearing a cowboy outfit, then one of a child falling off a pony, then one of a horse kicking a goat, and as the “ting!” of the clock gets louder you realize half-an-hour has passed and you haven’t even finished your breakfast. If you don’t finish your breakfast the baking system might think you don’t like pancakes anymore, so you wolf down the cold remnants and coffee. The “ting!” turns to a “blah! blah!” as the clock strikes 8. Time to go. The side door automatically unlocks as you turn the handle and enter the garage. The car disengages from the charging station and is lit up ready to go. The door slides open and you ease into the main seat. The destination “Office” is already displayed on the control. You press the “Go” button and after you have snapped the safety belt across your waist the garage door lifts up and the car quietly glides into the street. But you’re not watching. There was another video about another animal doing something funny that you wanted to watch. You can’t find it, so you switch to your video game. One or two more victories and you’ll be a level 43 master! Not that you care too much about the game. Anything to pass the

Information Technology Ethics time as the car directs itself on your way to work. Travelling to work is so boring. But soon enough, the car begins to “ting! ting!” as you approach the main door of the office. Out you hop. The car door closes and it glides away to the parking spaces. You are not even sure where the car parks itself. Maybe it wears a cowboy outfit, pushes children off ponies, and kicks goats. You’re not sure why you thought of that, but you chuckle as you enter the building. You see the first person of the day: Angela. She works on 6, or is it 8? You’ve seen her before. Checking your tablet you see that you are Facebook friends. You sent her a “like” last week. She must know you. But anyway, you travel up the elevator in silence. You think you should say something, but before you can speak she gets off on the 7th floor. She got off the wrong floor! Does she hate you so much that she would get off the wrong floor rather than speak to you? You didn’t even say anything to her. Why would she be so upset? You check your tablet. More messages. Ahah! Someone did remember that you are meeting the boss today and has sent you a “thumbs up” emoticon. Then a few more flood in. Probably just your calendar requesting emoticons. You make a mental note to turn that option off when you get back. If real people can’t be bothered to message you, why bother? You post a message about Angela on Facebook. She’s not a nice person, after all. You reach your desk at the usual time. The computer is on. There are a few post-its bobbing up and down on the right-hand screen, demanding your attention first. You already feel bored. It was a long drive in. You failed to level up on your video game. Angela annoyed you. You have to see your boss later. So much to do. You click on the screen and your calendar reminds you of a few things that you need to do, but you are already opening the video tab and searching for more cats, ponies, or anything funny. There is a video with a screen grab you recognize. Is that Angela? Is she really throwing that chair across the room? Did the leg of chair really stick into the wall? Wow! Now she’s in her own viral video! Something about going ballistic over a Facebook insult. You always knew Angela was a bit crazy. You are still chuckling when a voice message comes through. It’s the boss. So up the elevator you go. You reach the right floor without even having to think about it. Your calendar knows where you were going. You check your reflection in the tablet “mirror” and make sure you are clean and tidy. The tablet says you look good. Even so, you are nervous. This will be the second person you’ve seen today. That’s two more than usual! You tap your arrival into the secretarial kiosk and a notice appears. The face of your boss appears, or at least you think it is. You’ve never met. “Your position has been terminated,” says the image. Staring blankly, you click on the “appeal” button without even thinking. “You have violated the

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Preface provisions of the company’s rules of ethics, (1) misuse of computer resources.” retorts the image. You click on the “Legal appeal” button. In the box you write: “I have worked here for 10 years.” You can’t think of anything else to say, but surely your loyal service is worth something. You click “submit” but within a few seconds the message “Appeal denied” lights up the screen. A copy of your Facebook post is shown next to the video of Angela throwing the chair. Oh, she was angry about your post. You didn’t think she would react like that. Then you remember, you’ve never actually spoken. Your tablet “tings!” and a message appears noting the legal fees being deducted from your account. You wonder if your calendar picked the right lawyer. Your desk is dark when you return with a clock ticking down the seconds before you are required to leave the building. Propping up your tablet you see messages telling you to cheer up. There are more jobs out there. Indeed, your career folder is filling up. Job interviews, outright job offers, it’s all so easy. With the decline in the human population the demand for workers outstrips the supply. It won’t be long before you get another job, but, you sigh, it’ll probably be as boring as this one. For once, you wished everyone didn’t know anything and everything you do.

So if this is our future, is it good or bad? There are clearly many things to hope for in this story: A house that is so connected and in tune with its occupant that climate-control, water temperature, even breakfast, are perfectly matched. Technology helps us stay healthy, drive safe, organize our day, and facilitate our daily tasks. No cyborgs running amok here. We are released from the chores of today’s life. And then what? How many of us are geared up to be the spiritually enlightened souls that a perfectly technological world is meant to give us? Rather than reaching a higher plane, we could just as easily sink into a life devoid of the struggles that our evolution has prepared us for. What meaning do we attach to our activity? Who are we if we are not inventors that struggle to obviate the dangers of our existence and propel ourselves to a better world? And if we don’t need to struggle, what then? Perhaps the most dangerous aspect of our protagonist’s life is the lack of human interaction. We are social beings, but social beings capable of the most vicious attacks on our neighbors. While Twitter has been cited as a key support for organizers of the Arab Spring in 2013 (Wolman, 2013), social media has also been used by terrorist groups to disseminate their propaganda (Cowell & Scott, 2014). The effectiveness of these technologies due to the extent to which they are integrated into our lives. For some, one’s online life has become so important that defriending on Facebook can lead to murder (Flacy 2012), fatal accidents have been

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attributed to messaging while driving (Matyszczyk, 2015), and being online means being found and hounded wherever you go, even to the point of suicide (Dean 2012). Having friends is an essential part of being social, but the total count shouldn’t be more important than actually interacting with one another: Being together should be more important than being online; Hugging should be more important than “liking.” Of course, these dark images do not need to our future. But Hawking and others ask us to be aware of the potential pitfalls of our glorious advance in technology. Science fiction writers such as Jules Verne, Aldous Huxley, and Arthur C. Clarke have painted pictures of what the future could hold, while Hollywood has made its own contribution with movies such as Star Wars, Blade Runner, Terminator, The Matrix, and Avatar. At the end of the book or the movie, we are asked to ponder the question: What do we want technology to do for us, and what, in return, will technology do to us? This question is at the heart of our discussion over the benefits of developing technology that can transform the way we work, but which can also redefine our relationship to each other.

ACKNOWLEDGEMENTS

We would like to sincerely thank the department of research valorization of the University of Paris Descartes and the research supervision council of IUT Paris Descartes for their moral and financial support in realizing this project. Many thanks to all the colleagues who have participated in the international IS/IT Ethics workshop which has been held in the University of Paris Descartes in June 2014, and all the members of the organizing and scientific committees of this workshop. The present book has developed out of their multidisciplinary theoretical and empirical developments, critical reviews and reflections. We would like also to thank Corinne Daugan for her work on the translation of chapter three of this book and Clare Scott for her rigorous copy-editing. Their help and assistance were crucial in the final stages of preparation.

INTRODUCTION HAJER KEFI

“Through our scientific and technological genius we've made of this world a neighborhood. And now through our moral and ethical commitment we must make of it a brotherhood. We must all learn to live together as brothers—or we will all perish together as fools.” (Martin Luther King Jr.)

Information is everywhere. An unprecedented advance in digital technology in the last fifty years has made this possible. Information is a chance to make sense of the world around us. It is also a danger: it reveals our fragility and weaknesses. This is why we need frontiers, boundaries and filters to establish an order, a moral and ethical framework in which we can live together, create, preserve or express our differences. Ethics is at stake here, and more precisely what we call information technology ethics: a relatively new academic field which is still in search of its identity (Tavani, 2002). Ethics related to what exactly? Information Technology (IT) or Information Systems (IS)? For many people these two labels are almost synonymous because ‘systems’ seem to be presumed to be ‘computer systems’. This is certainly not true. A clear difference has been made between these terms since the sociotechnical research field (Bostrom and Heinen, 1977) defined information systems as purposeful devices aimed to process, store and communicate information in and between organizational settings using, as an infrastructural support, information technology, also called Information and communications technology (ICT). As such, IT can be considered as a subset (a subsystem) of IS, or more precisely IT based IS (IS/IT) defined as a combination of machines and people, virtual and social networks, material and social processes. From another perspective, IS seem to be regarded as organizational resources serving business purposes, while IT deals globally with computing and internet based applications at use in and outside organizations, for private and professional aims. Management Information Systems (MIS) has therefore become a specific academic curriculum

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Introduction

within business studies dealing with the financial, marketing, human resources and organizational aspects of IS, and also a research stream. Our focus in this book will be on the ethical issues related to IS/IT development and use, which we will refer to as IT ethics. Neighboring denominations exist of course. The most popular are ‘Computer ethics’ and ‘digital ethics’. Used interchangeably, they are defined as the branch of applied ethics which analyses the impacts of IS/IT on the rules of conduct in society (Bynum, 2011). Norbert Wiener is recognized as the founder of this field in the 1940s. Besides his seminal work on cybernetics, Wiener considers that the “great principles of justice” of one’s society could serve as the analytical canvas upon which IS/IT ethical issues have to be addressed (Wiener, 1950). During the 1980s, Maner clearly related IS/IT ethics, i.e. “ethical problems aggravated, transformed or created by computer technology” to philosophy and put forward the utilitarian and deontological underpinnings of this field. Another significant turning point was Moor’s article “What is Computer Ethics?” (1985), in which he argues that computer technology is revolutionary because it is logically malleable: “Computers are logically malleable in that they can be shaped and modeled to do any activity that can be characterized in terms of inputs, outputs and connecting logical operations [. . .] Because logic applies everywhere, the potential applications of computer technology appear limitless” (Moor, 1985, p.266).

At the same time, Mason (1986) made a valuable contribution by defining four ethical concerns; privacy, integrity, intellectual property and accessibility. Since that time, an extensive number of issues have emerged including private data protection (Sviokla and Gentile, 1990), IS/IT misuse (Dorf, 1999, Desai et al., 2008) and cybercriminality ((Baltzan and Phillips, 2008). Gotterbarn’s (1991) approach of IS/IT ethics is not focused on usage but advocates for a deeper attention to professional ethics in order to set down standards of good practice and codes of conduct for computing professionals. A philosophical research avenue has also been dedicated to this topic since the seventies and called Information Ethics with a substantive effort to develop a profound reflection on the ethical impact of IS/IT on human life and society. The core of the debate here is not anchored on devices

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and technical functionalities but on the ontological nature of information. Thus, philosophy of information has emerged as the meta theoretical underpinning of information ethics due to prolific philosophers like Luciano Floridi (1999a, 2006, 2008, 2011) and his information ethics approach. Floridi defines information ethics as follows: “an ontocentric, patient-oriented, ecological macroethics” (Floridi, 1999b, quoted by Floridi, 2010, p.84). Ontocentric: relates to the informational ontology according to which any entity (human/non-human, material/non material) can be described as an informational entity i.e. a cluster of data. Patient-oriented: and more precisely the Agent/Patient pair stands that any informational entity (the agent) produces, and/or undergoes (the patient) changes in the environment. Entities, agency, the environment and their interactions are equally described informationally. Ecological macroethics: is about a constructivist approach in which: “ethics is not only a question of dealing morally well with the world. It is also a question of constructing the world, improving its nature and shaping its development in the right way” (Floridi and Sanders, 2005, p.2).

This ecological (rather than semiotic), constructivist, ontological and patient/agent oriented approach leads to what Floridi names Infosphere i.e. the environment constituted by the totality of informational entities. Infosphere is a conceptual abstraction: a way to describe and represent the totality of Being from an informational perspective. Thus, information ethics is about the design of the infosphere, and evaluates all agents’ contributions to positively or negatively affect it. Philosophy of information and the related information ethics approach are intellectually intriguing and have provided a strong framework to address several key theoretical questions of great philosophical interest, arising from the investigation of the ethical implications of IS/IT. These approaches have nevertheless been criticized (Capurro, 2008), globally for their high level of abstraction and also because of the informational ontologism according to which any hierarchy between informational entities has to be omitted when talking about information ethics. Brey (2008) refers to this as the ‘untenable egalitarianism in the valuation of information objects’ which he argues leads to the failure of Floridi’ Information ethics to:

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Introduction “provide us an essential ethical component, namely, a framework and/or procedure that allows us to distinguish between the intrinsic worth of two very different informational items —a distinction that is crucial in making many kinds of ethical choices” (Ess, 2009, p. 162).

In the MIS field, IT ethics seems to be in search of its meta theoretical underpinnings within the classical field of moral philosophy, as it is the case for other applied ethics domains such as business ethics or medical and healthcare ethics. Namely, deontological ethics, consequentialist or utilitarian ethics, ethics of virtue and pragmatic ethics constitute the major streams of philosophical thoughts which sustain IT ethics developments (Mingers and Walsham, 2010). They are discussed in chapter seven of this volume. Besides philosophy, IT ethics investigations have so far been largely influenced by professional and technical approaches, addressing mainly legal, social, cultural and technological problems. Our concern in this book is to show how they could be complementary in shaping our understanding of what IT ethics is exactly about (in terms of the concepts at play) and to apprehend how social, business, educational or healthcare practices could raise ethical concerns. This volume is the product of a reflection process carried out by scholars from multiple research fields on the following issue: How human interactions with IS/IT could derive ethical implications? A scientific workshop was held in the University of Paris Descartes to provide these scholars with the opportunity to meet together and confront their points of view. Participation in this workshop is the result of a double blind peer reviewing process of a number of contributions anonymously submitted to our scientific committee. The authors of the best papers have then been invited to contribute to this book. Part I includes the contributions of our panelists and keynote speakers who have focused on the difficult question of the toolbox required to grasp IT ethical issues. They came together with the following questions: Do we have the adequate intellectual framework? Do we posit the pertinent questions? And do we have the legal, structural and institutional arsenal required to address these questions? In chapter one, Alain Bensoussan puts forward a new concern: what happens if IT encompasses stand-alone and autonomous systems capable of thinking, acting and producing effects on the environment? We now recognize that this is not science fiction and that some of these

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technologies exist and will develop rapidly in the next few years. A sustained support of Artificial Intelligence (AI) research over the past three decades has initiated the production process of intelligent technical beings: robots. Alain Bensoussan uses the law lens to apprehend the ethical implications of robots’ integration in human life. He discusses the suitability of existing laws on robots and proposes new and original concepts, such as ‘robot personhood’, ‘virtual persons’ and ‘cascading liability’. Anil Aggarwal develops in chapter two the concept of NetEthics or ethics of Internet. With more and more people communicating via the Internet, along with the wide use of social media, it is important for stakeholders to understand Internet Ethics. Many organizations and societies (American Computing Machinery, American Accounting Association, American Medical Association, etc.) have codes of conduct that their members must follow. The Internet does not have any such code. It would be impossible to have a standard “global” ethic code, since the Internet is not controlled by any one entity. However, we can create an ethic code for certain stakeholders. This chapter is an attempt in that direction, and provides a study of NetEthics from one stakeholder’s perspective, namely, the students in a western country (the United States). The third chapter is devoted to a philosophical discussion of a central ethical issue raised by IS/IT usage: intimacy. For Pierre-Michel Simonin, the integrity of the individual has a legal and social form under the injunction of the protection of privacy. This notion that is sourced deep within Greek thought is far from simple. It seems to play with the constant ambivalence between open and closed; bridge and wall, what is shown and what is hidden. The author develops what he calls the paradoxes of intimacy and explains that any (cyber) individual seeking for a place in the digital world has to leave traces that s/he knows s/he cannot control. Intimacy becomes as such a grey box which s/he claims and implicitly defends without much knowing what to put into it. In the second part of the book, the approach is different. Ethical issues emerge in specific contexts and require the implementation of specific solutions. It is therefore important to address each case with regard to its determinant factors. Healthcare, education and publishing are some of those social and business areas in which IS/IT are deeply integrated and recognized to raise moral and ethical dilemmas. Nabil Bikourane, in chapter four, presents a thorough overview of the ethical implications of an IS/IT based healthcare system: the electronic

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healthcare record. The author starts with a multi-disciplinary literature review, based on publications from many fields including medicine, law, economy, management, sociology and philosophy. Following an interpretive methodology, he analyzes how different stakeholders: namely the ethical committees, the medical and patient associations, perceive the role and impacts of the electronic health record in France (called DMP), especially on three aspects: the principle of autonomy, the respect of privacy and the over automation of the doctor-patient relationship. IT ethics is not only about avoiding the negative effects of IS/IT development and use. Serge Bolidum and Isabelle Walsh, in chapter five, have focused on how IS/IT could help in eliminating the effects of impairments. They use a grounded theory approach (Glaser, 1978, 1998, 2013; Glaser and Strauss, 1967) to analyze the individual life stories of eight students in an engineering school who present various mental and physical disabilities. They have developed what they call the digital-life enhanced basic social process framework in order to show how the interaction between health conditions and social context constitutes a starting point for analyzing one’s own main concerns. Especially for disabled people who are dramatically in need of regaining control of their bodies and minds. In a way, Serge Bolidum and Isabelle Walsh aim to prove that behind our laptops, avatars and social network profiles, we are all equal. Chapter six is about IS/IT codes of ethics in educational and academic institutions. Gilbertine Ikili Ossana and Marc Favier propose to carry out a comparative analysis of IS/IT codes of conduct use in three universities in France. They argue that an organization may adopt a code of conduct and impose it upon collaborators to regulate their usage of IS/IT, but this does not necessarily mean that an ethical IS/IT framework has been established. In other terms, codes of conduct and codes of ethics are not synonymous. To assess whether a given IS/IT code of conduct use could be acknowledged as a code of ethics, the authors propose an adaptation of Johnson’s framework (1985) according to which a professional code of ethics should be examined based on four types of obligations: obligations toward society, toward employers, toward clients, and toward colleagues and professional organizations. Ethics in the digital publishing industry is debated in chapter seven. Hajer Kefi and Lamine Sarr provide the theoretical underpinnings to the understanding of the socio-material changes brought about by digital technology in the book industry in terms of practices and ethical issues.

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Within a pluralistic research methodology, they put into practice a variety of research techniques (exploratory and confirmatory), which address usages, practices and perceptions of the stakeholders of the e-book chain. All these contributions are part of different research projects. Each addresses IT ethics from a specific empirical lens. All build upon their own theoretical underpinnings. The targeted readership of this book includes, but is not limited to, scholars and advanced students of philosophy, computer science, information theory, management information systems and related disciplines.

PART I: CONCEPTS

CHAPTER ONE ETHICS, LAW AND ROBOTS: WHAT REGULATION? ALAIN BENSOUSSAN

1. On the road to “singularity” 1.1 Developments in AI Artificial intelligence keeps developing as demonstrated by technological advances. In 1997 a computer defeated world chess champion Garry Kasparov; in 2011 the Watson program beat the human champions of Jeopardy! 1; and in 2014 a computer is said to have passed the Turing test2. Intelligent robots are gradually entering our everyday lives whether at home (do the cleaning, ensure home surveillance, keep an eye on children, take care of people, transport people, etc.), at work (greet customers, attend a board meeting, etc.) or in the street (autonomous cars). Intelligent robots are increasingly interacting with humans. . Thanks to their sensors, robots exceed some human faculties: they can hear, see, and feel faster and better than human. And as the information processed by sensors can be cross-referenced with already existing data — through the Internet or Big Data —, robots will develop a gigantic analytical capacity.

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A game show where contestants have to provide a response, phrased in the form of a question, thanks to the clues given in the form of answers. 2 The Turing test consists in a human judge engaging in a “blind” conversation with both a human and a computer: if the human judge is not able to tell the computer from the human, the computer is said to have passed the test.

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Futurologists and transhumanists like Ray Kurzweil3,who have predicted that the changeover to the “technological singularity”, i.e. the time when artificial intelligence capacity will exceed human intelligence capacity, will occur in the third decade of the 21st century, around 2035. In fact most industrialized states now consider that robotics will be the next frontier of technological revolution by 2020. However, the road to this revolution can be a treacherous journey filled with many ethical, legal and standard obstacles.

1.2 The ill-suited rules of property law Robots have not yet found their place in our legal system. Robots with artificial intelligence do not easily fall into the category of material goods. Property law is thus not adapted to robots. Nor can the law of persons be appropriate as for now. Today, the legal and regulatory framework in France or in Europe does not accommodate robotic activities. A new framework is therefore needed: a law of robots, falling somewhere between the law of property and the law of persons. As robots will be required to interact with humans, both in the public and private spheres, a myriad of issues and concerns raised about their rights, duties and liability. Amid the lack of an appropriate legal framework, several countries have adopted ethics policies to remedy shortcomings in the law.

1.3 The role of ethics Adopting an ethical approach in building a law of robots is essential, as the rule of ethics and the rule of law inevitably overlap. Let’s look at a textbook case: imagine that a driverless car, closely followed by a car with children wearing no seat belt, is about to hit an elderly crossing the street. If the driverless car brakes it avoids the elderly in front but the children in the car behind could be ejected because of its sudden braking. 3

Ray Kurzweil, “Your Robot Assistant Will Be Able to Do What No Human Can Do” http://bigthink.com/videos/ray-kurzweil-your-robot-assistant-will-be-able-todo-what-no-human-can-do via @bigthink

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In a situation like this, how can a smart car choose between two items of damage? What criteria must be paramount in its decision-making process? The debate is open, but a critical element in the quest of a solution will be to take into account the fact that humans and robots do not have the same computing power. The famous Three Laws of Robotics by the science fiction writer Isaac Asimov are food for thought:

1) “A robot may not injure a human being or, through inaction, allow a human being to come to harm. 2) A robot must obey any orders given to it by human beings, except where such orders would conflict with the First Law. 3) A robot must protect its own existence as long as such protection does not conflict with the First or Second Law5”

If at first glance, these Three Laws seem to be infallible, they are subject to misinterpretation. In fact, their strict application can lead to harmful behaviors for human, as Asimov shows himself in his sciencefiction books. Therefore, they should be adapted to our current legal and ethical system.

1.4 The role of policies Policies or charters can serve as a useful tool in the construction of an appropriate legal framework to try and iron out legal difficulties without waiting for lawmakers to act. In France the Ministry for the Economy, Industry and Digital Affairs is drawing up a non-binding draft charter of ethics. Other organizations and institutions have been elaborating for years on these issues, including the Strategic Business Division of the Department of Defense, the Research Centre of Saint-Cyr Coëtquidan schools (Crec), the Atomic Energy Commission (CEA) or the National Institute of Health and Medical Research (Inserm): various projects are in the pipeline. In Europe, the euRobotics coordination action financed by the EU Commission has proposed to grant third-generation robots an “Electronic personhood”. 5

Asimov, Isaac (1950). I, Robot.

Ethics, Law and Robots: What Regulation?

13

Other countries — South Korea, Denmark, Japan and the United States — have adopted ethics charters applicable to robots and droids. For my part, I have created a Charter on Robot Rights introducing a legal status for robots, where robot duties and rights are enshrined, such as the right to respect, the right to dignity and the right to identification7. While ethical reflection should not be overlooked, especially when it comes to human- or animal-like robots, it cannot make up for the instauration of a body of legal rules able to reshape the concepts of person and personal identity.

2. The robot “personhood” The introduction of artificial intelligence goes hand in hand with the introduction of a specific law, the foundation of which will be the creation of a suitable legal status, a singular legal personhood specific to robots and resulting from their interaction with humans.

2.1 The concept of “robot personhood” The solution should consist in devising a suitable legal status for robots, inspired from the one used for legal persons. The Legal personhood is a purely legal construction designed to meet practical needs and grant legal access to structures that have no physical existence, such as corporations, associations or trade unions. With legal personhood, legal persons are granted rights, much like natural persons: they can own their own assets, open a bank account, take legal actions to protect their interests or obtain indemnification for damage suffered, including moral damage (i.e. damage to their image or reputation). A similar approach should be considered for robots. The creation of a “robot personhood” is all the more justified since robots are acquiring an increasingly significant degree of freedom in relation to their environment and to the humans who use them. 7

Available at: http://www.alain-bensoussan.com/espace-cabinet/equipe/alainbensoussan/

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Chapter One

In the same way, robots could have the right to obtain an identifier and could be assigned code “3”. This could be a way to build a database or portal inventorying all intelligent and autonomous robots acting in an open environment (or, put otherwise, robots that are in contact with the public). A robot’s purpose is to operate autonomously in a closed or open environment, in cooperation with humans. Granting robots a personhood with an ID number is pivotal for managing liability, whether for the robot, its manufacturer, supplier, user, or its owner.

2.2 Components of the “robot personhood” When the robot operates in an open environment, it can interact with anyone. It is therefore essential for the robot to be recognizable: it needs a registration number, a name and a capital, much like a corporation. In case the robot causes damage, legal recourse and remedies must be available to the victims. The creation of a robot database identifying all robots acting in an open environment will contribute to the emergence of a law of robots.

2.3 Privacy issues Robots should have obligations; but they also should have rights. Including the right to privacy, as robots can collect data about the health and privacy of the individuals they are interacting with. For example a robot is able to tell a person with Alzheimer’s disease “The birthday of your grandson is coming soon”, or to a child with autism: “Here comes your brother,” or to an elderly: “Your granddaughter is here.” Protecting the privacy of individuals means protecting the memory of the robot. The pervasive influence of robots in our private lives will raise a variety of questions relating to the confidentiality of the data they may save and/or process. For now these issues are governed by the Data Protection Act.

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But robots — particularly service and assistance robots— will become “intimate hubs” of the life of their user, and the Data Protection Act may not be sufficient to regulate the informational cooperation that will be created between an individual and their robot. Likewise, robots processing personal data should be protected against the risk of security and data breach. Legislation should therefore be strengthened in this area. In France, the law relating to computer fraud (included in the French Criminal Code) should be applied to robots, as they fall within the category of automated data processing system within the meaning of such law, even if robots cannot only be reduced to that. However, the French Criminal Code, which punishes computer fraud (unauthorized data access, retention, handing or misuse) with prison sentences, was initially created for computer equipment and may require some adjustments in order to be extended to robot fraud.

2.4 Obstacles linked to civil liability The issue of liability is vital for the robotics industry. . As the degree of robot’s autonomy increases, the issue of its civil liability will rise. When the decision taken by a robot causes harm to a person, who is responsible for what, especially in case the robot is defective? A robot is a machine cooperating with the humans, operating in a private or public space, having learning abilities, capable of taking independent decisions and interacting with its environment. This brings new issues regarding liability and risk of accidents (e.g. when a robot drives a car; when a robot cooks…).

However, the regime of civil liability specific to robots does not exist in the actual state of law. For instance, the Three Laws of Robotics are actually principles used to form a system of values (a robot shall not endanger a human) and do not offer a workable legal framework in terms of liability. They are insufficient per se to regulate robotic activities as they fail to establish a legal qualification. 2.4.1 From fault-based liability to liability without fault

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Chapter One

The notion of liability, such as defined in the French Civil Code, is closely linked to human fault. Case law has always refused to attribute a harmful event to a machine — however smart it was — since it is not considered to be the author of the event. Indeed, liability is linked to the concept of autonomy in the decision making. In the early nineteenth century, the multiplication of accidents caused by machinery gradually changed liability law into a right to compensation. Judges established the presumption that machines (including automobiles) were dangerous. The relentless search for security has changed the law from “fault liability to liability “without fault” (strict liability8) in order to respond to the problem of compensation for damage caused “by things”. With technical progress, the concept of “things” has been interpreted more and more broadly. 2.4.2 Strict liability Two kinds of liabilities may apply to machines under French law, depending on the origin of the damage: whether liability for damage caused by a manufacturing defect (strict liability for defective products under the French Act of May 19, 198810 ) or liability for damage caused by an interaction of the machine with its environment. Liability for defective products refers to the situation where a manufacturer is held liable for the lack of safety of one of its products that caused harm to a person. Regarding the second type of strict liability, the one who controls the machine is deemed to be responsible (as long as there is no malfunction). For “autonomous” machines, i.e. machines able to respond on their own to the environment and to unexpected situations, there is today a legal vacuum regarding liability to the extent that it is impossible to determine who is liable.

8

Please note that strict liability under French law is different from the concept of strict liability under common law. 10 Act 98-389 of May 19, 1998, on liability for defective products (.French Civil Code, Art. 1386-1 and seq.).

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The system of values established by Asimov does not allow to identify who will be responsible for an accident caused by a robot that ill anticipates the situation and takes an unfortunate initiative: x The designer, in case of poorly designed architecture? x The programmer, in case of fault in a line of code? x The manufacturer in case of fault or flaw potentially dangerous to humans? x The user, in case of improper use? x The robot, capable of generating autonomous legal effects for its actions?

3. A new liability system 3.1 The principle of cascading liability Will the rise of robots change the liability system? Today, robots are like unidentified legal objects, halfway between artificial intelligence and machines. The existing legal framework is not adapted to these new legal entities. The robot’s liability should not be regarded as a block, but should be shared between the various stakeholders, based on a cascading liability scheme. For instance, policymakers could be inspired by the regime of liability established by American laws on autonomous vehicles: the AI robot designer should be liable and ultimately the robot manufacturer, or the robot’s owner or user, as the case may be. In Europe, the euRobotics coordination action has proposed a Green Paper on legal issues in robotics which is leaning towards assigning liability to the robot owner12.

12 The European Robotics Coordination Action, “Suggestion for a green paper on legal issues in robotics”, December 31, 2012, p. 55, http://www.eu-robotics.net/

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Note that in the case of robotics, one should beware of loosely interpreting the concept of ownership. The robot user should assume more liability than the robot owner, as the robot and the user interact with each other and this interaction may impact the robot’s behavior through its increasing cognitive capabilities.

3.2 The allocation of share capital To materialize “the liability of a robot” it would also be required to create a “share capital” and insurance. Like a corporation’s share capital, which enables to assess the ability of a business to meet its current and future financial obligations, the amount of the robot capital would be commensurate to the (economic or physical) risks potentially created by the robot. Ideally the higher the risks the robot could create, the higher the capital attached to its legal personhood should be. This is the basis on which some U.S. states have addressed the issue of autonomous cars. For an autonomous car to be licensed to hit the streets in the state of California, a $5 million insurance policy is required13. A database needs to be created to register autonomous cars and check whether they comply with this insurance requirement: hence the need for an “identity number”.

3.3 The creation of bank guarantees The capital usually comes together with bank guarantees. The idea would be to set up a financial protection system that could also be completed by a guarantee fund (or a bank guarantee, as in the field of real estate) to compensate the victims of damage caused by a robot. It is also possible to set up a guarantee fund that could be financed by the robotics industry or by a levy on insurance premiums, just as it is the case in France for traffic accident victims.

13

State of California, Senate Bill No. 1298, Chapter 570, Section 2.

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3.4 The necessity of a specific insurance scheme The allocation of a capital to the robot should be combined with the obligation to take out an insurance policy. Discussion should be conducted with insurers if we want robotic activities to be developed in the public’s interest. Insurers will probably have to propose special policies adapted torobot damage.

CHAPTER TWO NETETHICS: A STAKEHOLDER’S PERSPECTIVE ANIL AGGARWAL

1.Introduction From the Enron scandal to the Madoff Ponzi scheme, the corporate world has been rocked in recent years by the huge number of ethical lapses. Because of this, there is renewed emphasis on the study of ethics. Webster’s Dictionary defines ethics as, “...the discipline dealing with what is GOOD and BAD with moral duty and obligation”. William May (1983), a medicine ethicist, defines ethics as ‘‘Ethic supplies a type of corrective lens’. Given the state of corporate ethics, it is increasingly important to identify and teach ethics to our students. Many societies have developed their own code of ethics. For example, the International Society of Ethnobiology (ISE) (2006) defined its own code of ethics for its members, stating that: “The purpose of this Code of Ethics is to facilitate establishing ethical and equitable relationships: i. to optimise the positive outcomes and reduce as much as possible the adverse effects of research (in all its forms, including applied research and development work) and related activities of ethnobiologists that can disrupt or disenfranchise Indigenous peoples, traditional societies and local communities from their customary and chosen lifestyles; ii. and to provide a set of principles and practices to govern the conduct of all Members of the ISE who are involved in or proposing to be involved in research in all its forms, especially that concerning collation and use of traditional knowledge or collections of flora, fauna, or any other element of biocultural heritage found on community lands or territories.”

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Irrespective of which definition we study, ethics encourages students to behave in a socially acceptable manner by filtering out bad behavior. This becomes more important in the digital environment due to the open nature of the Internet. NetEthics consists of two components: ethics and the Internet. Much has been written about the Internet and ethics, but only recently have researchers begun studying Internet ethics. Karim, et al. (2009) studied the behaviour of Malaysian students in the context of academic ethics. Their findings indicate that personality traits such as (1) agreeableness, (2) conscientiousness and (3) emotional stability are significantly and negatively correlated with unethical Internet behavior in university students. Lau and Yuen (2014) investigated how the demographic variables of gender and socio-economic status (SES) influence the Internet ethics of students aged 11 to 16 in Hong Kong. Their results revealed that male students tended to engage in more unethical behavior than did female students. Many isolated studies have been made related to ethics in the academic environment. We extend this further by studying ethics in the context of the Internet. Diversity and the anonymity of the Internet, together, is creating an important research area. Recent cases of cyber bullying, including the death of a teenager, a gay student committing suicide because of the insensitive postings by roommates, and kids being lured into indecent acts, are only some of the reasons that Internet ethics should be developed. STUDYMODE (1999) provided a good reason for studying ethics, and asked the question: “Why should we be concerned about etiquette issues in the business arenas of the 90s? Basically because diversity based on gender, cultural background, age, and degree of experience in today's business, creates a clash of standards and behavioral expectation. Not only are these differences internationally a concern, but also a concern among the relationships of Americans”. The global nature of the Internet makes it available 24/7 from any time, any place in many different languages. The same is true for eLearning, which is also available 24/7 but in a restricted environment, implying e-learning students can be used as surrogates to observe real life behavior. Ethical lapses are not only a corporate problem, but equally so for government, non-profits and academia. In this paper, we study NetEthics for academia. We will use one stakeholder, the student, and the William Mays guidelines to study the students’ perception of NetEthics.

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2. Internet and NetEthics Though basic principles of ethics apply to both offline and NetEthics, there are some differences worth noting. Table 2-1 summarizes these differences: Offline Ethics

NetEthics

Audience

Mostly Homogenous

Heterogeneous

Perception

Identifiable

Anonymous

Scope

Local

Global

Participants

Older

Millennium

Table 2-1: Differences in off-line and on-line communication The Internet audience is heterogeneous in terms of gender, nationalities, culture, sexual orientation, etc. In addition, the Internet is global in nature which means culture and nationality play important parts in NetEthics. A participant from China could be communicating with another participant in Brazil, the U.S. or any other country. Since cultures are different, it can create a hostile environment. In addition, the Internet gives the perception of anonymity that in some cases encourages unethical behavior. Computer savvy people can create many accounts and hide their identities on the Internet, pretending and assuming different identities that make it hard to trace violators. This “fake” identity can lead to bullying, thefts, stalking and even murders. Internet reaches all aspects of an individual’s life via social networking, e-mail, shared document implying a need for global standards across all forms of communications. Since the Internet is used by the younger generation (commonly referred to as the millennials), they are more impressionable and vulnerable than the general adult population and must be protected from predators, bullying and other cybercrimes.

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3. Why NetEthics? In 1989, the Internet Architecture Board (IAB) issued a policy statement (referred to as RFC 1087) on the Internet and its ethical usage, “As is true of other common infrastructures (e.g., roads, water reservoirs and delivery systems, and the power generation and distribution network), there is widespread dependence on the Internet by its users for the support of day-to-day research activities. The reliable operation of the Internet and the responsible use of its resources is of common interest and concern for its users, operators and sponsors, etc.”

Though RFC 1087 did not address NetEthics directly, it did mention the “responsible” use of resources, implying any activity as unethical and unacceptable which purposely: a) seeks to gain unauthorized access to the resources of the Internet, b) disrupts the intended use of the Internet, c) wastes resources (people, capacity, computer) through such actions, d) destroys the integrity of computer-based information, and/or e) compromises the privacy of users. Several of the unacceptable behaviors (RFC 1087) are applicable to NetEthics. For example, compromising individual privacy by using false identity and getting private information from participants would be unacceptable. Misrepresentation would be an example of destroying integrity of computer-based information. Using computers responsibly necessitates that NetEthics be studied. Commenting on the need for NetEthics, Salazar (2010) noted: “Internet ethics covers the proper ways of information distribution, the type of information that is being passed on, and, in turn the protection of its users. Lack of internet ethics also means that there is no way for controlling what type of information will be sent through the network, including information that may cause harm to other people. Without internet ethics, there would be no real way of protecting any sensitive information that is sent through the network, and no way of controlling who is free to have access to that information, and what they’ll use it for.”

E-learning provides a false sense of anonymity and stakeholders post things that they would not say in off-line communications. Given the differences in ethics and NetEthics, and the necessity of compliance with codes like RFC 1087, it is essential to gain more insights into NetEthics.

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Aggarwal et al. (2012) have discussed ethics in the context of e-Learning. Communication is a big part of any e-Learning environment and there are many stakeholders in the eLearning process. Researchers (Aggarwal, 2012; Karim, 2009, etc.) have used students to mimic a real life environment. We will also use students as surrogates to study NetEthics, and focus on NetEthics as it relates to the Internet. It is important that students and faculty follow acceptable ethics, but at this stage what is acceptable is uncertain since there are no conventional standards. We study the students’ perception of an acceptable set of NetEthics in eLearning communication based on the following (2x2) model (Baltzan, 2015). See Table 2-2. Legal and ethical issues LEGAL

ILLEGAL

ETHICAL

I

II

UNETHICAL

III

IV

Table 2-2: Legal and ethical model The above model is chosen since it is widely accepted and clearly shows accepted levels of classifications with respect to legal and ethical issues. However, due to the diverse nature of the population, interpretations can differ significantly. An acceptable posting, which is both legal and ethical, belongs to quadrant I and an unacceptable posting, which is both illegal and unethical, belongs to quadrant IV. Ideally, we would like stakeholders to follow NetEthics that belong to quadrant I. However, this is where the agreement ends. What is legal or ethical in one jurisdiction may not be legal or ethical in another. For example, in some cultures it is legal to have multiple wives whereas in other cultures it is not. Posting from these two cultures will produce different quadrants in relations to the model. Since the Internet is open to global communities and communities are different, it is not possible to define quadrant I characteristics beyond some very basic common standards.

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The William May (1983) lens that is used in this study is helpful in identifying behavior that could lead to quadrant I. The following section describes the study.

4. Exploratory Study Aggarwal (2012) studied group diversity (gender, age, cultural background, age, sexual orientation, experience, etc.) and concluded that diversity creates a heterogeneous environment which, if not controlled, can create a dysfunctional or hostile environment resulting in a clash of standards and behavior. Though we did not address diversity in this study, the students’ perception of NetEthics provides some insights into their thinking related to NetEthics. We studied the overall perceptions of stakeholders irrespective of diversity. The following question was studied: How do students perceive NetEthics? The present study was conducted at an urban public university in the Mid-Atlantic area in the U.S. The university has a diverse student population. An introductory information systems course was selected for this study. The course is required of all students and has a diverse student population in terms of gender, race and nationality. As already mentioned, the e-learning environment mimics real life and is used in this study. We used a questionnaire to get the students’ responses and studied the results using SPSS. The questionnaire was divided into several parts. For the present study, we looked at the student perception of communication in the discussion forum area. The questionnaire was divided into two parts- Do’s and don’ts of posting in the discussion area. Students were asked to rank their importance with 1 being of high importance and 10 being of low importance. Figures 2-1 and 2-2 summarize the results.

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12 Average of report_offensive

10

Average of check_spell Average of Post_what_you_like

8

Average of Be_ethical

6

Average of do_cite_source 4

Average of ridicule_members Average of first_to_respond

2

Average of be_confrontational

0 Total Figure 2-1: Do’s of NetEthics

Based on the student responses, the following top five do’s were noted: xThink before you post xBe ethical xRespect other views xCheck facts xDo cite sources It appears students indirectly apply several layers of lenses before posting their responses in an academic environment. From the above responses, it is clear students applied the “corrective” lens related to selfrespect (think before you post, check facts, cite sources, be ethical) and

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diversity (respect others). These issues are both ethical and legal and should apply to quadrant I. The second part of the survey on the don’ts (do nots) included 15 questions and students were asked to rank the top. Figure 2-2 summarizes the don’ts of NetEthics: 9 8 7 6 5 4 3 2 1 0

Figure 2-2: Dont’s of NetEthics Based on the student responses, the following top five don’t s were noted: xPosts are offensive to races xPosts are offensive to gender xOffensive language xNo fake references xPosts are offensive to nationality It is clear from Figure 2 that the responses reflect that students indirectly use the “diversity” lens in selecting postings. Three out of the five top responses relate to diversity (race, gender and nationality).

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Offensive language and fake references relate to self-respect lenses. A word of caution: these responses could be due to the academic nature of the study since students are constantly reminded of university ethics rules and the necessity for compliance.

5. Discussion and Conclusion Based on our exploratory study, it is clear that NetEthics consists of several “corrective” or “filtered” lenses. The lenses from the student perspectives in an academic environment are: xSelf-respect and xDiversity The first filter level relates to self-respect. Meshanko (2015) defined respect as: “[...] an active process of non-judgmentally engaging people from all backgrounds. It is practiced to increase our awareness and effectiveness, and demonstrated in a manner that esteems both us and those with whom we interact.”

According to another definition (anonymous), self-respect is: “...pride and confidence in oneself; a feeling that one is behaving with honor and dignity...” Based on the students’ ranking of NetEthics, it appears they are indirectly using the “self-respect’ filter to gain self-respect. Meshhanko (2015) further describes the 12 rules of developing respect. He discusses these in the context of an organization, but some rules can also be applied to individual NetEthics. One rule “...develop curiosity about the perspective of others”, implies respect for diversity and differences. Mayhew and Media (2015) also noted that, “.recognizing workers' talents and contributions regardless of diverse cultural or physical characteristics is just one component of mutual respect.” Though the study was done for small businesses, it is equally valid for the academic environment. In academia, there is a diverse population where students mix and tend to develop respect for different views. We suspect the two lenses that emerge in the study are possibly due to the nature of the population. The students were graduate level and the

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average age was 31 years. In addition, almost 80% of the students were working. Commenting on workplace dynamics, Mayhew and Media (2015) noted that: “[…] Recognizing workers' talents and contributions regardless of diverse cultural or physical characteristics is just one component of mutual respect. In the workplace, there is one common goal: profitability. Employee diversity is a non-factor in assessing employee capabilities where the quality of work is an issue. Mutual respect in the workplace is based, in large part, on respect for colleagues' abilities and skills – and how well their expertise matches their job assignments. Mutual respect acknowledges talent, not race, color, gender or culture.”

Given that 80% of students were working, it is not surprising that “respect” and “diversity” lenses emerge as top filters. Though the results are preliminary, they provide some understanding into the students’ perception of NetEthics. This study, however, has several limitations, including the sample size of 44 students, which is quite small to make any generalizations. In addition, our work applies to only one stakeholder, the student, and should not be generalized to other populations. Student population is educated, mature and employed. This population would be very different than social media sites like Facebook, Twitter, etc. However, the study provides insights into lenses/filtration that stakeholders may use before posting on the Internet in an academic environment. This supports Kavuk, et al. (2011), who recommended parent monitoring of 6th, 7th and 8th graders early in their upbringing to support diversity. Ames et al. (2010) also suggested early training to appreciate diversity and respect. This is an interesting finding, which suggests students should be trained in and constantly reminded of diversity and self-respect early in their upbringing. This study, though limited, does provide a stepping stone for future research. As the Internet diffuses, more and more monitoring is needed to keep everybody civil and safe. This requires a universally accepted protocol that everyone must (should) follow, but which may also create conflict with free speech. Authors believe that everybody has a right to free speech but with a “responsibility”. It is this responsibility that is addressed in the paper. While it is hard to monitor and enforce standards on the Internet, we can provide guidelines for specific groups. This paper attempts to develop NetEthics for a specific group (e-Learning) of students and could create the groundwork for further improvements.

CHAPTER THREE THE GREY ZONE OF DIGITAL INTIMACY PIERRE-MICHEL SIMONIN1

1. Introduction There is no seemingly simpler concept, nor obviously a more universal one than intimacy: a divide between what is public and private, which involves political, social and legal aspects. That the borders of intimacy have been displaced with the time is commonplace; that they are not understood in the same way in different cultures remains indisputable; but what is even more so is the universality of this divide. However, it is not straightforward and contains very apparent paradoxes that its evidence cannot hide. x The first paradox between the open and the closed as it refers to both what I open to the one closest to me - my intimate - and what I close to others, which is supposed to make up my being. x A paradox then which concerns relatives of whom common sense would want them to have no more secrets from one another and to know one another perfectly well and who should have given up privacy. But this familiarity requires no changes, that each evolves in any case in the same direction. It may just as well be understood as the inability to hear one another in his proper otherness or simply to tackle, from habit or laziness, what is known to be the same, identical or familiar. A superb danger awaiting those who have become intimate and who would end up knowing one another the least ... or this fabulous adventure of those who would manage 1

Translated by Corinne Daugan (University of Paris Descartes)

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to spare an inner space that could be both hidden and offered to the other. x A further paradox is that of this proper space I guess the existence of, whose permanence I defend by barring the road to the other, but whose content I am nevertheless unable to define. This self that I don’t know, whose existence I assert, that self perhaps only the illusion of grammar (Nietzsche) or great pretension of my being (Freud) that self, synonymous with depth but which is actually only surface has all the characteristics of an empty set. x Paradox finally, home to ethics, which distinguishes what is decent from what is not; where the line always seems to be defined from the outside whereas it actually is the inside play of each one, defining according to the events and encounters what deserves or dares to be shown; where everyone is an actor more or less conscious of this voluntary exhibition. In other words, vulgarity, indecency remain more or less the exhibition of the other. Intimacy is a matter of space and quest or conquest and thus strongly linked with power, politics - the balance of power - and represents one of these entry points through which starts our relation to the world: the joint between the individual and the collective that is the essence of any organization. Without a doubt, this joint is sensitive to any social change but also technical one. It is the ultimate paradox that one can easily identify with individuals prone to consider the slightest innovation suspicious and unbearable harm to them at the time when they become willing participants in a still further exhibition. From blogs, when they appeared, but which seem to have quickly ceased to be at the forefront of infatuation, to social networking, we would have become the protagonists of journals that would no longer display anything intimate, confidences which by dint of being immediate and purely reactive would cease to be deep. The question is this: looking in morality for the rule which would better defend the interior space is still a technical response which can in any way be meaningful as long as this space is threatened; we should ensure that we are not ourselves complacent players in an exhibition that would simply move the lines of intimacy without violating it.

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A border that is moving? That displacement caused by the Internet is commonplace: this process started a long time ago and only to take the trivial example of a transaction made by credit card, the visibility is total. The transaction, what was purchased and from whom can be seen at least for the banker. From the latter to the ISP via the mobile telephone operator, any information about us, whether geographical position or activity, is available before the traces that we voluntarily leave on social networks. Applications such as finding friends, locate me prohibit anyone to evade from advertising or friendly prompts. In other words, unless you disconnect, the public space invades the private one that everyone agrees to consider a threat. Understanding these territories means studying what makes up the borders and ensures both meeting and dividing functions (Aubert and Haroche, 2011). Wall or bridge? Michel Serres (2001, 2012) worked on these devices; even more interesting is the window which both protects from the outside and gives view to it – somewhat as the keyhole.

2. What is shown, what is hidden What is that self that one seeks to defend, to protect from the sight of all and whose display on public places would violate honor, and dignity and freedom? Intimacy says what is further inside and deeper. A superlative of interior, the term refers to a climax within and refers to inter which means both the in-between and the relationship. The intimate can only be understood as such when compared to what it is not and participates at best to the sacred. Canon law distinguished between the external forum - the temporal jurisdiction of the Church – and inside - its authority over spiritual things. This forum, which has the sense of the trial court, obviously comes from forum, this public square where the common affairs are managed. And it cannot be a coincidence. Intimacy has meaning only in relation to what it is not but let’s add that the verb intimate tells well enough an implicitly suggested order; both to hierarchy and judgment. Intimacy is a matter of territory – thus of limits.

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Ancient Greek is said to evoke the intimate ĮȚįȦı which refers to both the feelings of shame, prudishness and honor. This is logical since respect is at stake here, namely the respect we owe to whom speaks with prudishness, or the respect we owe by keeping silent what would be shameful to someone else. Showing what should not be comes down to offending dignity – both of oneself and of the other. So there is here a divide between the visible and the hidden, between the interior space and the public space: Greek names įȘȝȠıȚȠı, what is owned by the public or the State – which comes from įȘȝȠı which before serving the people, means land, territory belonging to a community and is derived from the root ǻĮ- divide, share. Which on the other hand indicates the proper, ȚįȚȠȢ or ȚįȚȠIJȘȢ - the private man as opposed to the public man or the state precisely what remains must be treated with decency and respect. As for respect, etymologically the action of looking back, it is well expressed by ĮȚįȦı when it refers to oneself or someone else and ıİȕȦ when it comes to worship the gods. Ancient Greek and Latin especially closely treat this distinction between the private and the public, between what can be expressed or kept silent. What remains astonishing is this strange collusion between what is most worthy of respect and what is shameful, as if the depth of intimacy was shameful or more accurately as if it was shameful to be excavated. Because a reality always remains that we bury or dig and that will be debated, considered as soon as unearthed. Inexorably this division between an interior space and an external one refers to the partition of roles between women and men - a woman living in the Greek era, one that does not come out of home, who does not travel and will never travel abroad and be confronted to hostility, the Ancient figure of Hestia. While the man would rather be linked to Hermes, the woman is the devoted one, who purifies - including the return home of the traveler- but should be kept silent or anyway expressed with extreme caution and prudishness. Hence to consider that the inner consciousness is a form of femininity, there is only one step that can be even more easily crossed as in its own way it reminds of Freud’s theory of bisexuality. Tension between the intimate to be preserved to maintain one’s integrity and the public that must be faced to preserve one’s being, tension between an exterior that cannot fail to be threatening or infringing but which nevertheless remains the only opportunity to exist as the acting out, which is the very condition of the existence. Without it, we would be reduced to a pure potentiality; finally tension in imo pectore between all, that we believe, defines us where the glorious and shameful are shared, the aspiration and desire to be the most

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basic desire leads us to express ourselves and to reveal to one another our private spaces. But the intimate is not just this dark side, it also has to do with love, all we have a special relationship with. ĭȚȜȠȢ is one who enters our intimacy with whom we have special relationships (Wajcman, 2011). The term is bound up with the pacte- foedus – but also the confidence or even faithfides. The intimate therefore is committed in more than one way to reciprocity: both the respect we owe to the privacy of the other, but also to what is expected from him in return; but also as the gift to and from the one with whom one has intimacy- ȠĮȡȚȗȦ. Opening to the other reveals what is usually hidden, is relevant to a special relationship - it's bringing the other in the intimate - and it is this entry which marks the relationship, but therefore also the recognition. That this refers to persuasion, conviction or seduction is undeniable. ȆİȚșȦ refers to the act of persuading from which Greek also derives ʌȚıIJȚȢ which is both trust in others, faith, loyalty and the oath, that is to say commitment. Taken from the radical ȆȚș meaning linking, the term expresses well what is intimate in a relationship. Actually one can consider the intimate both from a static point of view and then it is what can be defended and kept silent to preserve its integrity; but also from a dynamic point of view, but then it is what is given in the form of a commitment which ties you and forces you; but a commitment which, under penalty of nullity or vulgarity, cannot be squandered by repeating to infinity. Here is what shows the ambivalence - or dynamics of intimacy not only this enclosed space that is screened from all but – above all? -what is shared, what is left open or ajar. No doubt we must never forget that there is no shade without light and it is in this respect that showing and hiding belong to the same movement. Easy to say any binary representation of intimacy - open / closed - risks to make us miss the essential: that intimacy is a matter of process and not of status; it always engages the relationship to the other - even if the spontaneous tendency is to return to the intimate close relationship whether romantic, sexual or friendly.

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3. A threefold dynamics Often does the war metaphor (border invasion) come up to refer to the displacement of borders. It is clear that it has continued to move with the changes, less from social struggles than from innovations and we did not wait for new technologies to notice it. Obviously the press was once attached to respect, that is to say, keeping silent, what its proximity to power let it necessarily know. The American press respected in its time Roosevelt’s request not to photograph his wheelchair or his splints; the French press kept silent almost to the end, the illegitimate life of Mitterrand, which was not even politically exploited by the opposition. This is a probable side effect of this long tradition of mistresses of the Prince and of the indifferent indulgence to the location of the trifle love affairs of its Establishment. Things have indeed changed but I am not sure we need to impute responsibility to the hyper-presidentialization and hyper-personalization of the quinquennium Sarkozy. In reality three joint logics are at stake – a political one (Baillet, 2011), which implies that power is to know and therefore to see; an ideological one which, trying to found the city, cannot not think what established it and therefore the connection between the local and the global, between the individual and society; individual but an individual who has not always existed, which has a date of birth in history, of an individual in which passion is intertwined with reason, an individual primarily concerned about preserving himself and his integrity without ever getting rid of the relationship to the other.

3.1 Political We have known since Michel Foucault, how much power is a matter of visibility and therefore of devices to get it. The invention of the police dates back to the times when we sought to solve the opacity of medieval society that prevented one to know who and where was this subject that the poorly managed administrative organization lacked to identify and whose knowledge could never be completely torn away from the influence of the church. Whether that presides over the birth of this curious process in which preventing and punishing are the same - monitoring and therefore visibility – is a well-known fact that the Panopticon Bentham shows, which functioned basically more as an architectural paradigm than political modernity. That can obviously be illustrated by architectural models as well as administrative systems, including the relationship between justice, police and prison; the first act was the administration of

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civil status to the expense of the church after the Revolution or the obligation to wear a first and last name that can be distinguished including that one found in Bayonne decree by which Napoleon forced the Jews mainly settled in Alsace and Lorraine – to take fixed names and surnames. The Modernity has not changed much the requirement of visibility and traceability including anthropometric passports and smart cards or geolocation system, which are logical paragons. Nevertheless, we still notice the ambivalent role of public power that both wants to see and know but which is nevertheless required to preserve the integrity of privacy including the prohibition of cross files and in the 70s by creating the CNIL2: the state guaranteed security and it is certainly around it that the conflict is the most likely between freedom and order. Provided, it is not the modern state which has invented the transparency requirement; it needed of course to create the possibility of social transparency, but this individual transparency had been organized by the Church from the third century. Just read Tertullian and his idea of baptism to understand that any conversion involves evidence of one’s sincerity. Going from one life to another, maintaining a link to the truth that promises baptism, supposes to kill the old self - mortification and penance – but also attests its link to another. Foucault (2013, p 156) points out in this respect that it is all the relation subjectivity / truth which is inverted as compared to the antique model ... It was then a question (think only of Plato) through the effort of a turnaround - that suggests conversion and that the myth of the cavern illustrates- to distinguish between the best among them, making them out, making them indifferent to govern better. Here is the salvation of all by the conversion of one: so is Oedipus, who in search of his identity and his fault, saves the whole city. With baptism, on the contrary, it is the salvation of everyone which is at stake the rebirth. Hence martyr which means bear witness and therefore suffer in one’s body for one’s loyalty to Christ. Surely Catholicism has invented here the winning formula of power, where it is the subject, it invents, which voluntarily bears proof of its innocence by showing at least its efforts, without waiting to be charged; which makes it all the more willingly (?) as original guilt is at stake. There is never far to go for the cup to the lips, for the proof to the test and so from what is felt, only what can be proved has

2

Commission nationale de l'informatique et des libertés : An independent administrative authority which is responsible for ensuring that information technology remains at the service of citizens (France)

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value. Without doubt it is from there that intimacy that gapes never goes without some sense of shame.

3.2 Ideological But this subject has a history as well as a justification. The individual appears only when it becomes possible, when basic survival conditions were insured, otherwise everyone necessarily remains subject to the requirement of the group, the tribe, obviously; but it shows again a negative portrayal of the individual - that also says its Greek equivalent atom- which still lacks undermining solidarity on behalf of the claim of his autonomy; to uphold the centrifugal forces over centripetal ones which alone can give body and strength to the group. But from Paul (Gal 3:28) the individual ceases to be a threat to become the center: he is no longer defined by the group to which he belongs and the only history that is worth remaining with his salvation that only He can accomplish for himself. Despite the progress of science and philosophy in the classical age which like Spinoza (1993) loathed to admit that man was an empire within an empire, neither the individual nor his desire for freedom would not go out of our representations. Liberalism, for which all central government is still perceived as an attack on freedom, the Enlightenment following the large movement initiated by Montaigne started spreading the reality of the individual as irrefutable evidence- he will never leave nor the political field nor ethics, even if it was first in the abstract form of the citizen. Yet there is a problem that Auguste Comte had seen – he cannot be the constituent element of a society, not being himself Social: family was the only possibility. What was already the argument in 89 and 92 to refuse the right to vote to women: belonging to the same entire society, they could not emit another vote than their husbands; their vote would be an unnecessary duplication. That says it all, if we want to argue that the posture was not without misogynist prejudice; not enough if we want to understand what is at stake here. Everything can be thought identically in terms of borders; in terms of in and out unless it is considered that the boundary between public space and private space is not set by the individual but by the family. The Romantic period and the exaltation of the self will be necessary for this border to move -the self in which Maurras sees hate and the dissolution of the nation, From Ancient Greece to now, through the Enlightenment, we

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can see there can’t be any intimacy without the introduction of a border as tight as possible from the outside almost always perceived as threatening ... or seductive. In Greece, the woman embodied this Interiority. It is one of those ideas that persist and that are present even in Freud despite his theory of bisexuality. For privacy, you need a vestal, a guardian of the fire and it is necessary to preserve relations with the strange externality, it will always be the role of man to invent passages: Hestia for indoor, Hermes outdoor; Hestia who plunges identity in the depths of the earth; Hermes who is at the corner of the door as Janus, who ensures transitions as well as a transaction between the sacred and the profane. The Christianity had made of the intimate the issue of authentication that only looked at God and his Ministers; by doing so, it invented a form of government, the exact joint between the inside and the outside, where it is to govern otherness by manifestation of the truth of the soul, for everyone to do his salvation. The intimate becomes an issue.

3.3 Individual Writing that the individual has a birth date with Paul stating that the individual could not be summed up to sexual, ethnic or social belongings finally means two distinct things: first that the individuation process is far from complete, that it would actually only begin; it is a process and not a fact; but also that the process of individuation always comes back, for whom becomes aware of oneself, to tear one’s integrity from the group and thus one’s autonomy. Since he can’t do without the relationship to the other and since the social link is always above individual integrity, remains what is instituted, what we fight for, what we always consider threatened by another group or city. Hence all the metaphors of the struggle of the war: the question of intimacy is always / already a political issue. Integrity, before designating the genuine, honest, authentic, refers to what cannot be touched - in every sense - hence also the idea of intangibility - which cannot be modified. The term is rich and also covers the full, the whole, that is to say this ability of integration which contributes to the strength of all. In other words, when we talk of moving the borders between public and private, we will always evoke this movement of integration, annexation. By constituting himself, the individual tends to take what was originally part of the public space and we must suppose that there is, opposite an exactly contrary movement, which will always make the public space resist or evade. So there has

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always / already been an individual politics and an ‘intimisation’ of politics that should not be underestimated or overlooked. There is, so there has always been a politics of the individual; the founders were addressing the united and indivisible nation in the image of the Republic that they intended to build; we are reaching out to individuals today, to the voters who are asked to speak to i.e speak out what they feel within; what was once expected from the sovereign to indicate what he considered of public interest; he is now asked to show particular interests without realizing the sinister perversion of the Republic that this entails. The Greek, in these particular times of ancient democracy, left his business and sometimes travelled over long distances, to come to the agora to decide common matters. Castoriadis points it out, the Greek has a passion for politics, "former citizens actually believed that the community, the polis was their business. They were passionate for that." (2013, p. 261) This means, in contrast to our modern designs where representation has interposed itself, that power and law are not external realities to which we must submit, even if at regular periods we mandate specialists to enact and exercise them, but on the contrary that they are common cases because of the same interest everyone puts in. It is perhaps significant that Castoriadis uses here the word passion: the political word specifically refers to the institution of a public space, a res publica, not by making away from passion or excluding private via some specialists, but rather by and on behalf of private passion for common. This is therefore not politics that protects the intimate by defining thereby, it is the other way around the intimate instituting politics. It can’t be haphazardous –Vernant (1985) insisted on it repeatedly- if geometry and democracy were born at the same time: the agora draws a space where no one can claim any superiority over the other, where everyone stays equidistant from the same point, abstract; politics, the common area is the center and like any geometric point finally occupies no space. Another way of proclaiming that it is not politics that would intimate to the secluded and thus protect; it is the intimate on the contrary that defines politics operating an output movement. The whole question, initiated by the ubiquity of cameras in the streets but also by those that we install or voluntarily use with our computers is asked here: who, from the political or intimate traces the border? Is it politics that defines the intimate, or the other way around or both by an

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indefinitely renewed feedback process? That's the question raised by modernity and which thus refers to closer sources of Athenian democracy. .

Everything seems now to be at stake in terms of concerns: I am being watched or am I not, with all the ambiguity that this expression can take. Am I the one, who by act of will, establishes a public space by saying it is of my concern? But then it is a public space that is created. Or rather is it a device - for example a video surveillance camera - spying on me, watching me and thus swelling the public space, to the point of ruining any idea of private or intimate, connoting perfectly what affects integrity, alienation? Any device actually involves provision: it actually is the arrangement or the organization of elements to respond to a specific goal. The device, in law and in fact is the completion of a process - after the expected elements, or the analysis of what exists, decisions are made, the machine is set to get what we have decided. Any device always tends to reduce the party to the element of a whole and to consider it only as an atom to be set to become meaningful. The device creates the system where the member is only properly placed as part of a whole. However simultaneously there is and there has been a political intimisation, which comes to assert that politics concerns me personally. But it also means integrating values in the sphere of the intimate that could have been considered exclusively political. This wide movement that may be called democratization, aims at extending the public space to the prohibited spheres: it is even, in the Nineteenth century, obviously extended to the corporate world: There is not a social reform that wouldn’t be understood as such. And all had as a goal to put an end to employers with a divine right and to give voice to those who had none; That movement stopped at the borders of the family, where patriarchy had beautiful days ahead. But one is forced to admit that, since the sixties at least, the family space has gradually incorporated in the name of political values, equal rights for women via the parental rights, the integrity of the individual over the right to contraception or abortion, goal as well as the children's rights, etc ... Make no mistake: we could consider this as annexation of intimacy by politics; yet it is the exact opposite. The fights have been led on behalf of the individual claiming his rights: let us refer to the Manifesto of the 363, which was, on the political ground, the exhibition of one of the most intimate acts trying to grab from politics the right to dispose of oneself, which did not apply to the local, only to the global. All that would have been shameful to confess, was now proclaimed

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as a political weapon. The same could be said about the PIC (priority issue Constitutionality): that any litigant, certainly on the occasion of litigation, can argue that his individual rights are altered by any law is exactly the crucial point where the individual, and not the citizen as such, because he is at the heart of the device, is entitled to preserve his integrity; which is another way of saying that this integrity has now filled all the political space. The exact opposite of Befehl ist Befehl3 which former Nazis thought they could claim. Individuals in the name of the intimate can proclaim non possumus!4 At the center, the individual was not going to leave his Place and if we observe well what can happen and be said on social networks, this is what we will be able to notice: it is in the very name of his integrity, i.e. existence that the individual asserts, talks, demands and shares, assuming that the legitimacy of his speech holds in its very existence. What we need now to investigate!

4. Social Networks: a less black than a grey box Tisseron (2011) points it out - the net only satisfies desires that have always existed - hiding, showing oneself, leaving traces; maintaining distance, be it only for preserving integrity; putting forward one’s thoughts, etc ... even though in the meanwhile new tensions arouse universality; interchangeability of interlocutors; arousing interest instead of communicating; immediacy, orality; plasticity of privacy; having many lives; beyond control ... The observation of fifty Facebook and Linkedin profiles inspire some remarks. Note that this observation is only the indicative media for the comments below and do not constitute in any way a rigorous scientific analysis but invites to further research; it is not intended as a demonstration but just as a series of examples. x The thrill of acting: the magic of the so called Web 2.0, the ability of not being only a consumer of information or knowledge, but to become a producer in it, should not be underestimated. It says the appropriation by the individual, and not only by the institutions, of 3 4

Befehl ist Befehl: Duty is duty non possumus: It is impossible

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speech and therefore of a broader public space. That I am, where I want, when I want, master of what I reveal or hide, represents a conquest which justifies everything. Being a producer means being autonomous, that is to say, setting myself the limits of intimacy that will no longer be set from the outside. Even if the type of network is essential – professional events will be delivered on Linkedin while Facebook expands to personal data- in all cases the network is working on the relationship, the interconnection where the event prevails because it is individual and personal: birthday or recruitment matters, who knows. x The illusion of being autonomous: in the very sense of Paul’s, the individual is freed from all laws. Autonomous, in the very sense of the term, the subject defines himself - and sometimes in different ways - the borders of his own intimacy: is considered intimate, just what at a definite time he keeps silent or he avoids saying - and this only until he reveals it. Almost anything that can be shown according to the limits set by himself. There is still a space of intimacy –which moves with the times: to show everything, yes, why not, but not all the time! Thus this is a curious paradox of an intimacy being reached by being disconnected, although this remains a voluntary act. x The delight of being a player: the endless practice of profiles, nicknames, avatars does not express the pleasure of pretense but that of play. Another way, with laughter, to substitute for the real which is too heavy, too restrictive, an imaginary that we can master. You can learn from pretending, as we know. Pretending can also be an outlet. After all, everything from literature to dance, there is no aesthetic representation without a lie. Plato hated them for it – but don’t they make at the same time the world bearable, living (Merleau-Ponty, 1953). Paradoxically, it is by standing at the center of all the networks – which has no center- that you deviate the best. In the classical ages the subject – Montaigne’s library or Descartes’s “stove” - always took time to withdraw and to escape chaos and try to think or put one’s acts together. The modern subject - the one Michel Serres calls Thumbelina-almost always connected, eager to leave messages and posts - is never isolated: in the thick maelstrom of the Web, in this constant background noise of the crowd, he does thirty-six thousand things at the same time; and takes no more time for laziness or idleness; or even less for reflection. The immediate has replaced meditation. The very idea of withdrawal as an essential part of the thinking or acting process; the

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very idea of repetition that makes thinking has now become futile. Thinking is not the result of a withdrawal but of a pawn that we push forward; intimacy is no longer a space that we are trying to protect, but a dice that is thrown. At the same time this sketch would not be complete if we did not consider, in addition to the fact of speaking out on these networks, the quality of what is said and exchanged: x Communicating rather than conversing: Almost none (less than 5%) started a conversation or a dialogue; nor expressed a thought or an opinion. The truth is that Facebook was not designed in this purpose - UNLESS you use the modality conversation which gets back to instant messaging. You can find everything there: moods of the day, information on what is done or not. Also, it can be noticed that gloomy feelings are more numerous than signs of joy. x Sharing so little: in addition to links to websites, often to ones that provide information which enables the function of sharing what could have escaped you, but a sharing that is useless insofar as these links do not dig deep in the Internet. Personal publications can be found with personal photographs; information on what is done and where you are. When we look closer, nothing very intimate is ever disclosed, nothing actually but fleeting moods or occasional joys. Nothing that can disclose the secret of whom does not confide but hides behind the screen of pseudo confessions. x Mirroring oneself unashamedly, not to mention a real devotion to the ego. Cult because one needs to testify to one’s presence at regular periods. There is something here reminding of communion which complies with the demands of the holy connection. Selfpromotion or that of one’s avatars – the children that are exhibited are nothing but the expected glorious reward in the name of parenting? In the end, we hardly speak about the world, about business or about the others but merely about ourselves.

5. Four lessons to be learnt The question rose about a possible shifting of borders of the intimate. It now takes its full meaning. With the obvious concern of the cameras at each location corner and into our apartments through our webcams, the intrusion of this systematic external eye for political or security reasons, it does not matter which could make us fear the collapse of the sphere of

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intimacy, one must take into account the obvious complacency that the modern subject has at exposing his self or at watching or getting to know everything. This phenomenon is certainly not new – it is probably as old as public space itself – and it would always be wrong to underestimate the myriad of tricks that individuals have displayed to avoid scrutiny when facing the public force. Cat and mouse, cop and robbers? No doubt! But there is something unusual, which affects the new morality. We can detail it in four points.

5.1 Inversion of concerns Nothing is more interesting than the window and it is not insignificant that a renowned computer operating system was named after it. If it is customary to assume that the window is what protects both from the rigors of the climate and prying eyes, you should never forget that it is also what enables to look outside while protecting – the best being to see without being seen, or at least to be glimpsed by the one whose attention we are trying to catch. Sign of wealth and power, the window is an opening to the world and also an attempted takeover. Like any tool, it is both what unites and separates, a mediate. The crazy dream of knowing everything and seeing everything, perfectly illustrated by the panopticon, is not only that of politics aiming at enforcing an order in the social space that will always be considered too thick, too obscure. If the political project of someone like A. Comte, who organized homes and regulated the age for women to have 3 kids, tends to be more of a tyrannical nightmare than an utopia; it nevertheless illustrates the inevitable tension between order and freedom and therefore between social order and privacy. Who holds power always knows too much while the individual never knows enough. Each has his role and howls of outrage that everyone cries out against any attack to his private life is but the tactical moment of a game in which everyone looks at everyone as lapdogs. On the side of the subject, the digital window is also behind what we hide to see everything and know everything – which, as we know- does not go without some political embarrassment even if in return, the politicians have played with it more often than not. Pretending to be a producer, meaning to be one at least, which the internet allows in any case, refers to a peculiar device about which we could write that public space is

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now under the yoke of intimate eyes – hence ‘peopolisation’ of public life is just one of the signs. Being aware, connected becomes the categorical imperative which makes students surf the web during classes or the train traveller or commuter to take his smartphone out and send messages frantically… This inversion of concerns in the field of knowledge is so valuable because it organizes an almost universal provision of knowledge, but which in the field of politics fades the debate to its most trivial appearances, actually reorganizes the space of the intimate. If it is not wrong to say that it is the view of the surveillance cameras which makes and expands public space; it might just as well be written that it is the eye of the internet user that annexes almost the entire public sphere to the private. Confusions which certainly blurs the line and forces the individual to protect himself in some other ways. This reversal of concerns is not far from the device identified by Foucault (2013) concerning baptism. The intimate must exist and therefore to be visible and active. Each of us must bear witness to his or her existence by drawing attention to him or her. If the field of privacy was formerly scrutinized by the supercilious confessor who was awaiting penance and evidence, and coveted by a politician, it is now on the table; voluntarily. Here is what is new or almost: the culprit must prove his innocence; the individual must prove his existence. Nonetheless, it never resembles public criticism; it is far from the forced confessions of Stalinist trials, the subject preserves himself, by communicating only on his presence; nothing more.

5.2 A grey box rather than a transparent one Second characteristic of this new intimacy: it is empty or almost empty. Intimacy can be summarized in its sole proclamation. And becomes some sort of concept in full extension, but with no understanding. Mingling feelings, emotions, but ultimately so few passions, this intimacy hardly reveals anything, nothing that is not acceptable by social norm, nothing that is not politically correct. The only immediately visible reversal of values that shape the contours of the intimate is the promotion of the self which goes against the traditional precepts of humility and discretion. Nothing is said, or more precisely, it simply reminds of our existence.

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Communication entirely self-centred, towards oneself, for oneself, it is not an exhibition but rather an imposition of the intimate: a probable response to the atomization of the individual; to this desolation (Verlassenheit) where Arendt (2005) saw the modern form of alienation, this privacy, more stated than actually exhibited, stands as the supreme object, the ultimate argument. As a logical principle that cannot be discussed. Intimacy really is a scandal - ıțȐȞįĮȜȠȞ – the stumbling block that slides under your feet to make you fall; it ends any conversation or make it impossible because it only refers to moods, feelings or emotions. Holy empire of the opinion that is presented as the sacred argument. Intimacy that is spread on the net just comes down to the principle of a frontier not to trespass: more customs post than real frontier actually. We must once more emphasize the ambivalence of intimacy less exposed than objected as we oppose a priority issue of constitutionality. Fulfilment of an individuality which is set at the center of the device, achieving Paul’s promise but on such irrational grounds that it denies any form of dialogue, as it was just about to start. Designed as a home which it would be criminal to break into, intimacy is all the less revealed as it seems to be spread out. It remains more like a wall than a window. That, in their own logics, which have more to do with Puritanism, web players such as Eric Schmidt, CEO of Google or Mark Zuckerberg, the founder of Facebook, have been able to put an end to the private domain, arguing that the secret was only useful to criminals; that the industrial logic has finally tainted our social relationships making us believe that transparency and traceability were genuine signs of authenticity should not mislead. It is never said as little as when things are said to everyone. We never show as little as when we seem to exhibit it all. The wall holds this time in the impossible decision with emotion; in the improbable promotion of subjectivity where feelings work as absolute denial. It has hardly moved; allows as little to be seen. Perhaps nothing!

5.3 Mental regression? On networks, the subject is to be seen and heard but it shouldn’t be forgotten that his identity is but a profile or an avatar, which can be defined at will or modified according to one’s goals. It shouldn’t be forgotten that this improbable quest of universality has no designated addressees but the whole world. We all learned that there was effective communication as long as there is a specific recipient and dialogue once

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the other has been recognized as an interlocutor with whom we will switch roles as transmitter and recipient. Addressing the whole world is not addressing anyone. It is only the pretense of exchange. A virtual exchange may be a force that guarantees anonymity behind which to hide; that anonymity that big cities used to offer. It represents yet a fabulous defeat: irresponsibility. It is indeed a game where we mime our hopes and our projects and fake our importance: the privacy we present remains feigned; a pawn pushed forward that has no more consequences than the prison that we impose without passing through the departure square. A game or a party within the meaning of Caillois (1963), serving as an outlet but where nothing really matters, nor rumors spreading, nor the photos broadcast. A lawless space, internet detractors, sometimes complain where everything is allowed and nothing punishable since no one can be caught: not a playground but a mock space. All in all, the power of social networks, the frantic propensity to stay connected perhaps are the only acceptable side of the adolescents’ and adulescents’ addiction to online games or consoles. Does this mean talking about mental regression, defeat of thought or simply of headlong flight? If scrutinizing intimacy remained the prerogative of the priest or the psychoanalyst, we should not forget however that imagination is that by which reality is tolerable and desirable, or to paraphrase Lacan (2001), whereby the truth lies in the real. Thus, the great game displayed / deployed on the internet is nothing more than an intimacy that veils and unveils; something like the dance of the seven veils that would only apply as a promise of elsewhere; as an imaginary in which we could be both actors and authors rather than simply read in novels.

5.4 Inversion of values There is a real reversal of values that will all the better be understood as it is compared with periodic surveys conducted by various institutes provided they can be given some credit. It is impossible to check to what extent the exchanges as personal as they may seem actually remain perfectly self-centred. One single goal is targeted: to be seen, recognized but respected above all. This space drawn by the internet, which some call topological, is the one where the other ceases to be the remote we can always accommodate

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with, but on the contrary the close, getting too close. Hell will be more readily the other that he adjoins my security perimeter; the other has become my neighbor; and even if philosophy has kept thinking the otherness of the other, it is not certain that it has the tools to think the proximity of the one that comes closer. That the subject of intimacy which is exhibited has anticipated the danger by emptying it of all substance is proven. But once again it implies a one-way relationship, entirely directed to the self where what matters is not so much what is offered but what is asked. Quite revealing is respect which ranks first in the survey led by IFOP in 2013 while tolerance glides down to number 5 and solidarity ranks last. It should not be forgotten that tolerance, which remains a default value, what is borne in the other since unable to be eradicated, lies in the effort we make with ourselves for the sake of the other; to recognize the other as other. Conversely, respect is the effort that is required from the other to recognize yourself. Disturbing inversion which is not produced but only amplified by new technologies that the reluctant individual will have grasped, eager for recognition but very fearful; and even worsened by the last ranking of solidarity which is nevertheless both the condition of any possible sociality and one of any moral principles with reciprocity. If novelty there is, it resides here in this intimacy, which is not offered but only objected; in reality opposed; in this cruel lack of generosity that makes of the intimate a shelter in the shape of a screen. If there was movement, it would lie in this amazing inversion, where for the first time in history, it would be privacy, even grey, which would represent a real threat to the social and political order.

PART II: PRACTICES

CHAPTER FOUR THE ELECTRONIC HEALTH RECORD: GOVERNANCE, PRIVACY AND LEGAL ISSUES NABIL BIKOURANE

1.Introduction Information Technology and Information Systems (IS/IT) play an important role in public life, as in the Healthcare sector, supported by political will. The latter is supported by the economic environment in France characterized by the shortage of resources and deficits. Public authorities consider IS as a means to improve the management of the care system by optimizing patients’ health paths and the coordination between all health actors. Since 1998, the “mission for the computerization of the health system” coordinated diverse projects: healthcare professional card (CPS), the insurance card (SESAM-Vitale), the Health-social network (RSS) and the computerization of practitioners’ workstations. The European Commission adopted an action plan for a European area of eHealth in May 2004. The expression “eHealth” contains various instruments which rely on IS/IT to facilitate and improve the prevention, the diagnosis, the treatment and the medical follow-up acts as well as health management. Within that framework, the law of August 13th, 2004, relative to Health insurance in France, launched the Electronic Health Record (DMP1) project. This device will allow to reach the expressed goals more efficiently in the field of eHealth, namely, “the coordination, the quality and the continuity of care”.

1

DMP : Electronic Health Record called in French healthcare system DMP “Dossier Medical Personnel”

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According to the statutory provisions of August 13th, 2004 as well as other measures relative to DMP, the latter is a computerized medical record, which allows the healthcare professionals to share the health information useful for care coordination. It gives them, with the preliminary agreement of the patient, medical information (medical antecedents, laboratory analysis results, imaging, current treatments) from other healthcare professionals (general practitioners, specialists, nursing or hospital staff), so defining the medical profile of every patient. The implementation of the DMP has aroused a quite particular interest from the members of the national and international Ethics Committees. Authors from highly varied fields (medicine, sociology, economy, management, law, philosophy …), have also dealt with the subject, in particular, through the wider question of IS in healthcare. According to Brouchet (2007), “the maintenance of the quality of life is under surveillance. Everything can be imagined, everything and its opposite, in the analysis of a situation where the understanding, the assimilation and the generalized application of management databases are situated in the sensitive health area”.

For both the DMP, and more generally the IS/IT in health, the notices are contradictory and often complex. The consultant jurist authorizes or suggests conducts, but it is not enough to determine the truth. In this field, the ethics commands the law (Brouchet, 2007). To take into account all the opinions is necessary; our whole society must be questioned about this major theme. The digital language is not a medical discovery, but its generalized use modifies considerably the conditions of the action in the field of care. In what ways does DMP, as an information system, present ethical risks? How does literature on ethics allow a better understanding of these risks? At first, we will expose some universal principles of medical ethics, by confronting them to ICT/IS in healthcare (1). This ethical reflection will then be restricted to Electronic Health Record (DMP) and its stakes (2).

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2. Ethical reflection on information systems in healthcare “eHealth”, “inter-institutions network”, “Electronic Health Record” are some notions characterizing the use of IS/IT in the Healthcare sector. This new way of envisaging records processing with information relative to a patient, arouses a double feeling, that is, a sense of attraction which can be combined with fears which sometimes take over. For the advocates of computerization, this avenue presents advantages in terms of costs, of time and patients follow-up. It raises, however, several questions relative to confidentiality, to the access and the contents of various computing supports. These questions are not specific to healthcare. They also arise when we envisage public administration either in “paper” terms or electronic. This situation shows how important it is in a networks era “to proceed, beyond the immediate adaptations of the legal framework, in a thorough analysis of informative architectures organized to assure the lawfulness but also, even especially, to guarantee the respect for the fundamental rights of citizens” (Benyekhlef, 2004). This respect is important for establishing a feeling of trust among patients for the processing of their information in an environment promoting its circulation (Lacroix and Chassigneux, 2007). It brings us then to question society’s values and the ethical principles involved in IS conception and utilization in health, in order to exchange and share medical information between healthcare actors. Before analyzing DMP in the second part, as a new medical information system, we will present, in this first part, some major principles of medical ethics, such as they stand out from the literature. These principles will be confronted with IS in healthcare, in order to appreciate their “human side”.

2.1 Patient autonomy Autonomy is the capacity to choose freely, without constraint or incitement of whatever nature. It includes informed consent without being reduced to it. To be autonomous, indeed, is to engage in an approach, to be for the initiative. There is an intention to participate in a decision and not only to agree on a proposal (Roigt, 2007). The first justification of the right to privacy is based on the respect of autonomy and the right to self-determination. Thus, each person has the

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fundamental right to keep his or her secrets and to reveal only what he or she wants of his or her personal life, and to whom he or she wants (Beauchamp and Childress, 2001). In the field of health, the autonomy principle supposes that all patients wish to be constantly informed about their health and thus participate in the medical decisions concerning them. According to Ricoeur (1990), human dignity is based on the respect of patient autonomy which allows patients to take part in medical decisions concerning them. It is a way of assuring that individuals keep a sense of their own “durability”, despite the physical and psychological changes brought about by the disease. Thus, IS/IT in healthcare must be designed with the intention of improving patient autonomy, by encouraging the transparency, that is, better information for the patient. Considering the repercussions on a patient’s health state inherent to communication of information, the authors wondered about the direct access to information by a patient. Does the latter have to reach it directly or ask a healthcare professional to exercise this right for him? If some countries have recognized for a long time the right of every concerned person to act directly, others have only accepted this possibility in the last few years, while maintaining the use of an intermediary (as in the case of DMP in France). Nevertheless, that this right is directly applied or not, has for corollary to allow concerned person to ask for rectification, even for deletion of their data. With a sample made up of 87 healthcare actors, composed of doctors, paramedical staff, designers of IS, hosts of medical data and administrative personnel, Béranger and al. (2013) attribute an ethical score out of 100 to appreciate ethical expectations of participants relative to the use of IS/IT in health. The most important scores concern the principles of autonomy and beneficence. For actors concerned by the study, the use of IS/IT in healthcare has to contribute to the well-being of the patients and their autonomy.

2.2 Respect of Privacy and Confidentiality The right to privacy and the respect of confidentiality are the most fundamental values and actions within the framework of the therapeutic relation: it is about the rights of patients (right to secrecy, right to confidentiality) and the duties of healthcare professionals (duty of confidentiality, secrecy obligation) (Roigt, 2007).

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These rights and duties apply in the same way to every individual in his/her relations with others, each being responsible for protecting what was confided. According to Roigt (2007), these rights and duties are closely tied to legal and ethical currents which guide our relations as well as our social and contractual relationships. Moreover, the notion of “medical secrecy” evolved from a duty freely granted to a legal obligation, to stand out as fundamental law (Durand, 1999). The evolution of these principles toward a fundamental law status can be found in some of the values inherent to our society: the respect of personal autonomy and privacy (Beauchamp and Childress, 2001). We can summarize the foundations of privacy and confidentiality respect through two main ethical approaches: the consequentialist approach, involving instrumental considerations, expresses that “confidentiality would be essential in any free and frank relationship, in trust establishment, closely tied to beneficence principle, and that it would be essential to prevent individuals against damages, closely tied to non-malfeasance principle (Audy, 2006). We respect confidentiality with the aim of avoiding the consequences of confidentiality breaking. According to an ethical approach, where confidentiality is an intrinsic value, it also turns out “essential to promote people autonomy and therefore, their dignity” (Audy, 2006). In this situation, the fact that healthcare professionals do not respect their commitments relative to confidentiality is reprehensible in itself even if there is no damage. In the healthcare field, the use of IS/IT raises several fears: because the computerization of medical data implies several suppliers, individual responsibility concerning the protection of confidentiality may be eroded. The nature of discretion and the professional responsibility regarding confidentiality are modified in this new context. Furthermore, according to Demers and al. (2004), digitalization of diverse files brought together within the health system allows to move from a punctual transmission logic to an any-moment sharing information logic, where every participant of the network becomes at the same time a potential broadcaster and receiver of information. Thus, the advent of IS in health area arouses some apprehensions relative to confidentiality and security of data and networks. Networks give access to a much larger amount of personal data than “paper files” constituted individually by a healthcare professional. A larger number of people can have access, with or without authorization, to visualize, copy,

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modify, communicate or eliminate information. An unauthorized access could affect patients’ confidentiality. In addition, the electronic environment requires that users know and understand how it works in order to be able to react quickly to any incidents which can arise during its use.

2.3 Primacy of “beneficence” toward patients The will of public authorities to engage in the computerization of healthcare systems and, particularly, to set up more or less developed projects of electronic health records is undeniable. Expert reports as well as doctrine suggest that computerization could lead to an improvement of health services at diverse levels (Lacroix and Chassigneux, 2007). The main advantage of electronic health records, from the point of view of the patient, is the increase of security and the improvement of care. The access to more complete information about the patient, to his or her medical antecedents and current treatment leads to the reduction of the number of “adverse effects” avoidable in healthcare system, which are generally caused by an ineffective management of information. Indeed, previous studies have demonstrated that the number of inappropriate prescriptions and medications errors has decreased significantly with the use of a system of electronic prescriptions (Tamblyn et al., 2003). The advantage of these systems is twofold: information about use and dosage recommended by diverse medical bodies and warnings relative to interactions can contribute to the improvement of prescriptions contents. Moreover, the fact that these prescriptions are digitalized contributes to reducing the risks relative to its legibility and interpretation. In short, we consider that tools associated to the electronic records and the access to a complete “health portrait” of a patient aim to assure the quality of care (Degoulet and Fieschi, 1991). It can also improve the access to healthcare by decreasing waiting times (Lacroix and Chassigneux, 2007). For these authors, greater security, potentially reducing the length of a hospital stay, leads to an improvement of waiting times required to have access to a hospital bed. Greater accessibility to information can allow a faster and more precise patients’ diagnosis and consequently improve productivity. The study of Béranger et al. (2013), previously cited, demonstrates that autonomy and Beneficence principles obtain the highest scores. This

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demonstrates the importance of these two principles in the eyes of various healthcare actors, questioned about the use of IS/IT in the healthcare field. For these actors, it is necessary that the patient sees in electronic records a vector for the improvement of care quality. Full support to dematerialized communication device and consent in sharing medical records, suppose that a patient’s priority is the improvement of his or her health. The user will be motivated if it can be demonstrated that it he will gain advantages, for example, a faster and effective intervention in the case of an emergency.

2.4 Preservation of the therapeutic relationship The doctor-patient relationship implies at the same time a power game, because a doctor detains knowledge of a patient’s body that confers him superiority, but also implies an ethical requirement because a patient should be respected as a subject (Russ and Leguil, 2008). According to these authors, medical ethics depends then on the arbitration made between these two logics. On the one hand, a technical logic (body-object) based on medical knowledge, on the other, an ethical logic (living-body) centered on the clinical know-how and including the relationship to a patient as subject. According to the first logic, the doctor represents for the patient the one who knows. We expect the doctor to be able to solve health problems thanks to his knowledge. Within this relationship, qualified as asymmetric by Russ and Leguil (2008) and Marchall (2011), the doctor, because of his knowledge, has a power over the patient. Being able to cure him, but also being able to tell him what he does not know about his body. So, thanks to his knowledge and his clinical experience, the duty of a doctor is to avoid diagnosis mistakes and to be able to translate complex notions into accessible terms for the patient. As for the second ethical logic, the doctor-patient relationship cannot be reduced to a transmission of medical information. The doctor also has to commit his own subjectivity to say tactfully what it is necessary to say (Russ and Leguil, 2008). The disease is a physical event which takes on a certain meaning for the patient according to his living experience. So, when the doctor speaks to the patient of this physical event, he has to respect the psychological meaning of the disease for the subject. The doctor’s mission is at the same time to inform the patient, but also, in the name of respect for the person, to measure the effect of his words.

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Computerization of patient’s data raises the concern to see doctorpatient relationship tend towards the first logic. Indeed, reducing the patient to some computerized health data can damage the relational logic of care, and consequently, be dangerous for medical prescription. The use of electronic supports in healthcare allows keeping track of all interventions, pathologies and prescribed medicine. In addition, this also helps in decision-making and clinical information data banks, including, for example, clinical directives as well as pathologies profiles. Are these devices not going to influence the role of the doctor himself in making a diagnosis? (Garg et al., 2005). In the same vein, the Ethics Committee2 evokes the risk of a disappearance of clinical examination for the benefit of the technique and “body-object”. As for Marchal (2011), he prevents the “triangulation” risk of healthcare relationship by the presence of a computer which stands between the doctor and his patient. According to Marchal, the “technicization” of medicine can conflict with the relational and human component necessary for a quality clinical practice. He insists, besides, while underlining the role of various senses in medical practice (touch, sight, hearing) on the importance of the classic and direct medical interview, not only for diagnosis but also for the establishment of a trust relationship between the patient and his/her doctor.

2.5 Solidarity and justice in healthcare access These two principles aim to share available resources between all patients. They are closely linked to the notions of equality and equity which intervene directly in the process of a judicial decision. Ideally, any action should tend towards a perfect equality, but under certain circumstances, the equity is often imperative in order to establish priorities and hierarchy in acts to be realized (Beranger et al., 2013). This principle contains a dimension which can be described as “macro-ethics” concerning all patients while autonomy and beneficence principles have a more individual and relational dimension considered as “micro-ethics”. This “macro-ethics” dimension is justified in a context of economic resources shortage. An effective management of a healthcare system is not 2

Legal Notice of the French Ethics Commission N°104, May 2008. Access : http://www.ccne-ethique.fr/sites/default/files /publications/avis_104.pdf

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only a public health question, it is also an ethical question, because wasting public money compromises the health of the most deprived and the future generations. Thus, a more effective storage and analysis of health data by means of IS/IT can lead to an increase of the capacity to make examinations and decrease redundant examinations (Lacroix and Chassigneux, 2007). As a consequence, a larger number of patients can be served within the same period. Some authors argue furthermore that electronic health allows to improve coordination and care planning (Roigt, 2007). Because electronic records can follow the patient during his/her travels, all medical teams can access information at the right moment. This allows to plan required services through the continuum of care, to coordinate work of implied actors, including surgery services, and thus, to continuously produce integrated care. This coordination would allow to reduce time spent in hospitals and to make important savings (Lacroix and Chassigneux, 2007). The optimization of cost and time inherent to every medical or surgical act is an advantage for the whole economy. Improved planning, decrease of stay lengths and reduction of services halving will have favorable repercussions on public expenses relative to healthcare system. According to a Canadian study, carried out by the Commission of access to information, implementation of electronic health records for all Canadians would lead to a spending cut in the order of 4,7 to 7,3 billion dollars annually. In the current context where costs associated to health are a generalized concern, this advantage has a considerable weight. However, in the study of Beranger et al. (2013), attributing scores to each of ethical principles according to their importance in the conception and the use of IS/IT in health, the principle of solidarity had the lowest score compared to other principles (autonomy, beneficence and nonmalfeasance). For Beranger et al., the fact that the solidarity principle is indirectly involved in the doctor-patient relationship, means that it is not one of the first concerns of professionals. The same report is made by Ethics Committee from the point of view of the patient. According to this committee, an IS/IT device primarily justified by deficit reduction will be counterproductive. In contrast, it will be more attractive if patients’ wellbeing is put forward. The beneficence principle seems to be favored by patients and other actors of the healthcare system. The superiority of this

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principle is made to the detriment of the principle of justice which is more abstract, collective and less geared towards the immediate existing concerns in the doctor-patient relationship (Beranger et al ., 2013). After reviewing some universal ethical principles which emerge from the reflection on IS/IT in the field of healthcare, we will focus on some ethical debates relative to DMP, as a new form of IS in healthcare. It brings us to question the values of society and the ethical principles involved in the conception and the use of DMP allowing the sharing of medical information and care coordination.

3. DMP, as an information system, faced with medical ethics principles The DMP was created in 2005, in accordance with the Statutory law of August 13th, 2004 relative to Healthcare insurance in France, to set up a digital system giving to 63 million people insured by Social Security access by internet to their electronic health record. For various health actors, DMP constitutes a tool that must favor coordination, care quality, communication improvement and reduction of iatrogenic accidents as well as redundant examinations. It is a patient’s medical file, containing digital health information concerning him/her. All these issues, although very praiseworthy at first sight, cannot hide some apprehensions expressed by professionals healthcare and users. These concern the reliability of DMP and its capacity to become a major device in the service to patients and the whole healthcare system. Before evoking these apprehensions, we will first present briefly these new electric health records that make up DMP.

3.1 Presentation of DMP, its advantages, limits and risks The change in the naming of electronic health records (at first baptized “shared records”, renamed “personalized records” before receiving its current name) gives evidence that, in reality, the range of patient privileges allows diverse appreciations on behalf of project protagonists. Legal questions about DMP which emerge in law are particularly concerned the creation, access, preservation and closure of DMP. The law of August 13th, 2004 brings only some directives around the four

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aforesaid axes without detailing their contents. Furthermore, it does not oblige either patients or professionals Healthcare to create a DMP which is based on the voluntary principle. So, every beneficiary of health insurance can have a DMP if he/she wishes. The creation of DMP is made at the request of a patient or by a doctor. If the initiative comes from the doctor, or from the healthcare structure, the patient must be informed in order to give his/her consent. The doctor, or the healthcare structure, should possess compatible software, or be able to connect directly via internet to the DMP website. It is also by internet that a patient connects to his/her DMP and manages it (access rights of professionals healthcare, data hiding…). DMP is a patient property. The latter must have a social-security card and a National Health Identification number (INS), generated at DMP creation. Thus, patient security is based on the couple “Identifying (INS) – password”, via an Internet protected connection (HTTP). The data is hosted in France. DMP hosting is under the responsibility of the National Agency of Shared Information Systems (ASIP health), under the Ministry of Health authority. The grouping of companies ATOS Origin and La Poste was selected and approved by the Health Minister to assure national storage of DMP, with a very high level of security and confidentiality. Concerning the access of professionals healthcare to DMP, the patient has a “masking right”, allowing him/her to hide some information and limit the access for certain healthcare professionals. There is however an exception to this access restriction: when the patient is unable to express his/her will freely, as in the case of an emergency which requires an immediate intervention. In this situation, the rule applied is called “broken glass”. This procedure allows every healthcare professional to access DMP when patient health entails an immediate risk. The “broken glass” access mode must be indicated in DMP. Besides, occupational medicine, banks, employers, mutual insurance companies as well as unauthorized patient healthcare professionals, do not have the right to access DMP. Any unauthorized access would constitute an offence punishable with suspension and a fine. As regards the contents of DMP, and in absence of specific legal text, data communicated in DMP can be varied. We can enumerate it:

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a section intended for prevention synthesis of antecedents and allergies reports of consultation, hospitalization, radiology, biology… important Acts and treatments undertaken (prescribed medicine…) masked Documents “hidden data”: as we underlined previously, a patient can ask that certain documents are not visible by all healthcare professionals authorized to visit DMP. They will be accessible only by their authors, treating doctors and patient. In some cases, healthcare professionals can add in DMP documents which, because of their sensitive nature, will be made visible only when a patient has been informed about their contents and has given his agreement.

Considering the elements previously evoked as well as DMP perceptions by designers, healthcare professionals and all users, several advantages, limits and risks can be highlighted. We can summarize them in the following table 4-1: Advantages

Limits

Risks

- Allow patients to transmit personal health data to any professional and whenever. - Avoid redundancy in prescription of additional examinations. This will decrease patient hardness and cost for society. - Be an educational vector for health: an informed patient will take better care. - Improve patients’ medical behavior: learn to communicate with healthcare professionals, to exchange and question their habits.

- DMP will not replace professional medical records. - The exhaustiveness seems impossible to require, because of the right granted to patients to mask and hide certain data. - Certain patients will maybe prefer to stay in ignorance of a diagnosis of serious illness or overly technical details. - It is not obvious that DMP will allow making important savings (cost of implementation, system of care which urges to prescribe…).

- Risk of harming confidentiality of critical data. - Risk of people discrimination. - Risk of constituting data banks in which we cannot prejudge the use by pharmaceutical industry, insurances… - Risk of a too partial use of DMP (wrong or incomplete data, lack of interest for DMP on behalf of professionals…).

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- Risk of harming - Allow patients to - DMP will not replace confidentiality of critical transmit personal health professional medical data. data to any professional records. and whenever. - Risk of people - The exhaustiveness discrimination. - Avoid redundancy in seems impossible to prescription of - Risk of constituting data require, because of the additional examinations. right granted to patients banks in which we cannot This will decrease prejudge the use by to mask and hide certain pharmaceutical industry, patient hardness and data. cost for society. insurances… - Certain patients will - Risk of a too partial use - Be an educational maybe prefer to stay in vector for health: an of DMP (wrong or ignorance of a diagnosis informed patient will incomplete data, lack of of serious illness or take better care. interest for DMP on overly technical details. behalf of - Improve patients’ - It is not obvious that medical behavior: learn professionals…). DMP will allow to make important savings (cost of to communicate with healthcare implementation, system professionals, to of care which urges to prescribe…). exchange and question their habits. Source: synthesis according to CCNE, CNOM and CISS3

Table 4-1: advantages, limits and risks inherent to DMP Beyond evoked the limits and risks in the previous table, other ethical considerations accentuate critics of health actors and users towards DMP. Their fears concern in particular the capacity of DMP to preserve privacy and the ethics of care.

3.2 Ethical questions inherent to DMP Ethical problems relative to DMP can be approached in consideration of some ethical principles, such as patient autonomy, respect of privacy and confidentiality of health data. Furthermore, some questioning associated to the triangulation of doctor-patient relationship feed the DMP ethical reflection.

3

CCNE : Conseil Consultatif National de l'Ethique ; CNOM : Conseil National de l'Ordre des Médecins ; CISS : Collectif Inter associatif Sur la Santé.

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3.2.1 DMP faced with patient autonomy and the right of selfdetermination DMP is characterized by its humanist aspect: every healthcare system actor participates and takes part in decisions which determine the success or failure of the device (Brouchet, on 2007). Patient, doctor and society representatives meet in an environment where equity has to reign thanks to the omnipresent participation of communication, too often considered as abandoned. For the patient, the assertion of a trust in his/her civic rights, a certain possibility of choice in healthcare pathways are recognized (Brouchet, 2007). Thus, it is necessary to describe to a patient the problems with which he will be faced and will have to deal with in agreement with his partners. Is medical confidentiality compatible with the massive storage of data even in a hyper-protected place? How can he/she manage his/her own data, be it physical or psychological? Who will have to help him (or educate him) for it? Can he erase from digital memory what does not seem convenient to him or her? So many questions about patient autonomy as a fundamental principle of medical ethics exist, which shows at the same time the limits of this principle in DMP context. Because DMP facilitates universal access to information relative to health data, we can consider that this device is in the service of a bigger participation of people to medical decisions. It is in keeping with better autonomy and therapeutic alliance. Regarding the management of DMP by a patient, the autonomy principle can be illustrated by the “right to mask” and the procedure called “broken glass”. Indeed, the right to mask some information of DMP by a patient is the implementation of the autonomy principle in which legislators recognize him or her as the owner of DMP. However, sometimes this autonomy can itself be against patient interest. Acting on his/her own data could distort analyses and conclusions of healthcare professionals. We can then wonder if legislative imperatives regarding data protection relative to patient health and privacy, as well as ethical imperatives of the autonomy principle could not compromise the potential efficiency of DMP.

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Because to suppose that the majority of patients resort only intermittently to the masking, the simple fact for a practitioner that the masking exists at least as a possibility could limit the utility of such a tool. Another illustration of the tension between patient interest and his autonomy is the “broken glass” procedure. This procedure allows healthcare professionals to access DMP in the case of an emergency or other situation of vital risk. The emergency nature should be proved afterwards. However, if the person had asserted “his deliberate opposition to the fact that his/her data is consulted in such a situation”, healthcare professionals cannot bypass this right, and will have to come up against a “wall” in wanting to access patient data. Thus, data masking and “broken glass” opposition are expressions of the autonomy principle which can, however, go against the interest of the patient. 3.2.2 Autonomy versus solidarity: the economic dimension As far as DMP, created on the initiative of patient, facilitates his access to information relative to his/her care track record, we can consider that it is at the service of a bigger autonomy and participation of people to medical decisions. However, as evoked previously, in a situation of economic resources shortage, an effective management of a care system is at the same time a public health requirement and an ethical obligation. The respect for individual autonomy must be balanced with the principle of solidarity (or justice) which can possibly enforce limits. This principle contains a “macro-ethical” dimension which aims to access care by all users, in equality, and while taking into account economic restricted resources (Lacroix and Chassigneux, 2007). It is justifiable that society wants to give responsibilities to healthcare users, to fight against medical nomadism or the redundancy of biological examinations. Health has a cost and the management of this cost is not merely an economic or political question: it is also an ethical question. Indeed, wasting economic resources raises an ethical problem which is all the more acute as it comes inevitably true to the detriment of other health sectors which would have benefited from these resources. So, computerization of health data through DMP aims at coordinating care and at mitigating redundancy of prescribed examinations. This will

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decreases the hardness for patients and the cost for healthcare insurance. It is especially justified in the case of chronic diseases requiring several interventions and actors, and a better coordination all along a patient’s clinical pathway (Roigt, 2007). According to the Ethics Committee, respect for individual autonomy can be reconciled with the principle of collective solidarity only if a patient sees in the electronic tool a device for improving the quality of care. Then he would be motivated if it is demonstrated that DMP is to be used to his own advantage, for example, faster and more effective care. Tension between respect for individual autonomy and the political will of rational planning of health costs would risk being critical if the objective of care quality improvement is subordinated to other reasons expected, such as a management control by administrative authorities (Picard and al., 2006). According to the Ethics Committee, a project centered firstly on cuts in the Health insurance deficit should be taken away as an irrevocable depreciation threat of DMP. If DMP has, as its displayed objective suggests, to favor coordination of care, public authorities hope legitimately that a better coordination will have favorable economic consequences. Whatever the doubts about a possible economic impact of DMP are, it is obvious that DMP implementation could have economic effects only if it attracted the wide support of people and healthcare professionals. Besides, to our knowledge, there is no study estimating profits in terms of cost savings inherent to DMP implementation. However, The Court of Auditors made public, on February 19th, 2013, a report on DMP cost. It estimates the cost of DMP implementation at 210 million euros between 2005 and 2011. It is then interested in complementary investments relative to DMP, to estimate the global cost at approximately 500 million euros. Since DMP was first operational (in the middle of 2011), about 400 000 records were created, up to the beginning of 2014. Thus, ethical interrogation cannot be separated from the concern of healthcare costs reduction. Wasting available resources engages in a rationing logic which can indirectly affect the quality of care. That is why there would be no ethical objection to confiding to DMP the objective of public deficit reduction.

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3.2.3 DMP, protection of confidentiality and IS/IT insecurity DMP fits into a cultural context of distrust. The fact that the advantage of interpersonal communication is counterbalanced by a bigger insecurity is a very wide-spread feeling. On the one hand the IS/IT story gives evidence that in spite of the precautions taken by the designers of programs, the possibilities of theft of confidential data exist. DMP has the power to enhance possibilities of information transmission. The fear is that personal health data can “travel” via internet, that it can be intercepted, for example, by pharmaceutical companies, insurers or potential employers. On the other hand, the IS/IT equipment is not always reliable in its manipulation. It is a source of stressful episodes (breakdown or theft of computer, recording errors, losses or change of records, virus, complexity of use procedures and computer jargon…). Is IT/IS security itself a generator of anxiety for healthcare professionals as well as for patient (loss of login or password, equipment quality, time required…)? The consequences of a weakness at network security level could be much more significant than those ensuing from an unauthorized access to “paper files” contained in the archives of a hospital. Moreover, other apprehensions focus on the quality and the life expectancy of computing service providers. Several of these companies have been recently created, explaining questionings about their reliability, longevity and the consequences of a possible bankruptcy. These challenges relative to conception, security and implementation of DMP are not without consequences on healthcare systems and patients, because if patients are afraid of electronic records, that could decrease their trust in the healthcare system and its actors. Patients could be reluctant to supply all necessary or relevant information. Consequently, this lack of information could have a negative impact on healthcare professionals’ capacity to provide adequate care (Litton et al., 2003). To avoid this situation, it is important to inform patients about DMP purposes, which includes the fact that electronic health data can be communicated, shared and transferred between provinces and territories. Also, the emphasis must be on transparency and security measures taken to assure confidentiality and quality of records and media.

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As regards the quality of records, information relative to patient health must be reliable, available and accessible at any time. To do so, healthcare professionals should implement material, administrative and technical measures assuring quality information as well as privacy of DMP data and security (Dusserre, 2002). The security of networks implies their technical reliability and an affective reassurance of the accesses. Patient access to his/her DMP thanks to his/her social-security card and his/her national health identifier (INS), are provided at DMP creation. As for the healthcare professional, he has to be identified thanks to his/her professional card (professional healthcare card - CPS). These procedures of identification aim at restricting the accesses to DMP and those of each actor concerned by health patient data. As for the material and electronic support, security obligation has to lead thoughts about the equipment reliability and its capacity to prevent any kind of risk inherent to a breakdown, error or hostile attacks. All these measures are intended to avoid any internal or external embezzlement during DMP data processing. Thus, security of records and media is central in protecting health information contained in DMP. It aims to strengthen, on the one hand, confidentiality that must prevail in data processing and, on the other hand, the trusting feeling that must exist in any relation between a patient and a healthcare professional. In summary, the respect of privacy and confidentiality inherent to DMP data requires a thorough reflection of concerned authorities on the information which should not appear in a DMP, or which could be included only with some precautions and specific guarantees. This reflection should request all the concerned actors, and particularly the CNIL. 3.2.4 Evolution of the therapeutic relation: risk of disappearance of the clinical examination for the benefit of the technique Computerization of DMP health data contains an important advantage from a relational point of view. It leads to a better communication between healthcare professionals, which allows to break free of the isolation relative to medical practice in a distant region. This communication favors experiences sharing faced with pathology (Lacroix and Chassigneux,

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2007). The consideration of these precautions in DMP allows the establishment of a reliable link between patients and doctors. However, medical “technicalization” can be conflictual with the relational and human component necessary for a quality clinical practice (Marchal, 2011). For this author, the presence of DMP which is interposed between a doctor and a patient can be dangerous for medical prescription.

DMP (IS/IT) Doctor Patient

Fig.4-1. DMP and the Doctor-Patient Relationship In the same spirit, the Ethics Committee warns of the risk of a disappearance of clinical examination in favor of technical benefits. According to Marchal (2011), to reduce a patient to some computing data goes against any ethical practice of medicine. He insists on the importance of the medical interview and the direct contact with the patient to establish a quality diagnosis centered on trust between the patient and his/her doctor. According to Brouchet (2007), the multifactorial and exhaustive dimension of DMP can lead, at first sight, to its “depersonalization”. The responsible role of a doctor is to avoid this apprehension, because the story of a patient cannot amount to a simple succession of “copy – paste”. Thus, DMP cannot be considered as a neutral device as regards the relation between doctor and patient. Undoubtedly, it can give to doctor the first elements facilitating the dialogue with the patient, and in this way agree with the principle of beneficence. However, and according to the Ethics Committee, malfeasance risk exists if DMP succeeds insidiously to reduce the clinical interrogation. The danger would be that diagnosis is too dependent on virtual information at the disposal of the practitioner.

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4. Conclusion Far from creating unanimity on ethical questions, the DMP arouses instead a lot of interest although that “ethic/information system” debate is not new. Indeed, dematerialization of patient’s health data, coupled with his/her private information, increase the sensibility of DMP data and privacy problems. As previously evoked, the first purpose of DMP is to enhance coordination, quality and continuity of the care, by improving communication and transparency, and by reducing iatrogenic accidents and redundant examinations, and consequently, the costs for society. However, it seems clear that DMP practices may be subject to some risks as we will synthesize in four points: 1. The right to have (or not) DMP as well as the right to mask some DMP information are central to the autonomy principle of a patient in which the legislator recognizes to him/her as the owner of DMP. However, this right of masking data can sometimes itself be against patient interest. Acting on his/her own health data could falsify medical diagnosis and conclusions. We can then wonder if the ethical imperative of the autonomy principle would not compromise the potential efficiency of DMP. 2. The respect of patient autonomy must be put in balance with the principle of solidarity (or justice) which can impose limits. It is justifiable that public authorities want to give greater responsibilities to healthcare users, in particular in a context of economic resources shortage. However, a project that is primarily centered on insurance deficit reduction will arouse low support and adherence on behalf of users, mainly worried by the quality of care and their well-being. 3. DMP raises apprehensions relative to health data privacy, networks security and media reliability. Furthermore, as DMP involves several actors (healthcare professionals, patients, hosts…), it risks having an erosion of the individual responsibility as regards to the protection of confidentiality. 4. The “technicalization” of medicine can be conflictual with the relational and human components necessary for a quality clinical practice. The risk here is that DMP leads to a “dehumanization” of

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the doctor-patient relationship, reducing the latter to some computing data. It is important to reach a certain balance between limits which we perceive as necessary for privacy and medical ethics, and the need to access information for a better efficiency of the healthcare system. The DMP is an ambitious, wide reaching and expensive project. It is a society choice in a country where all citizens are social security contributors. It has to face a difficulty which is not specific to it but which relates in a more general way to the capacities of our society to generally secure the electronic circulation of information.

CHAPTER FIVE INFORMATION TECHNOLOGY AS A MEANS TO HELP ELIMINATE THE EFFECTS OF IMPAIRMENTS SERGE BOLIDUM AND ISABELLE WALSH

1.Introduction Most human beings live and work under artificial light at least eight hours a day, have to absorb large amounts of information, and use multiple communication technologies, living busy lives and facing new kinds of stress. Although the world population was estimated at 7.091 billion in 2013, increasing by 200,000 a day (Planetoscope, 2013), the trend is for individuals to live within four walls, using computer-mediated social networks to stay in touch or to communicate with anybody anywhere. With the proliferation and ubiquity of information systems and technology (IS/IT), most individuals cannot avoid constantly engaging with such technology in order to do their work (Ayyagari et al, 2011). However, IS/IT (such as computers, software, and mobile devices) is not an unalloyed benefit to the human race; it can be damaging. ICT can harm our mental health by the exponential increase in stress factors (Tarafdar et al., 2007; Ayyagari et al., 2011) that they induce, such as work overload, role ambiguity, invasion of privacy, work–home conflict, and job insecurity. Ragu-Nathan and colleagues (2008) found in their study that individuals experiencing “technostress” have lower productivity and job satisfaction, and decreased commitment to the organization. About one quarter of the world’s population will have mental disorders during their lifetime (World Health Organization (WHO), 2001). The correlation between IS/IT and unhealthy lifestyles, inactivity, urban life, and loneliness, has been verified (Walsh, 2011). For instance, greater Internet use has been found to lead to a decline in social involvement, and increased feelings of loneliness and depression (Sjöberg and Fromm,

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2001). Some mental disorders that are linked to ICT use – such as depression and burnouts, anxiety and agitation, deficits in attention and concentration, difficulties performing at school or work, and loss of intellectual sharpness – are leading to significant individual, social, and economic challenges. Modern civilization has endeavored to make our lives easier to understand and to control, but this has not been – and probably never will be – achieved (Bauman, 2013). Post-modern authors, such as Bauman, see the world as more challenging than it ever was, and some strong ethical issues emerge as being linked to IS/IT – e.g., private versus professional data usage, confidentiality, and secured versus open data. However, beyond considering the possible negative aspects of IS/IT for everyone, one might investigate its positive aspects for people with disabilities. Using a grounded-theory approach (Glaser and Strauss, 1967), the present work asks: In what cases, and how, can IS/IT help eliminate the effects of disabled people’s impairments? We first define “disabilities,” as these – and their implications – come in many forms and are often misunderstood. According to the WHO’s International Classification of Functioning, Disability and Health – which provides a standardized language and framework for the description of health and health-related issues, disability is “an umbrella term for impairments, activity limitations, and participation restrictions, denoting the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)” (World Report on Disability, 2011, p.86).

We investigate how IS/IT development may be considered as aiming to improve disabled people’s collective wellbeing (Spinoza and Delègue, 2001). In doing this, we distance ourselves from an ethnocentric position that has been defined as an “exaggerated tendency to think the characteristics of one’s group or race superior to those of other groups or races” (Drever, 1952, p.86). Our work is organized as follows. First, we detail our methodology. Second, we present the categories and main concern that emerged from our data. Third, we describe the results, discussing how IS/IT can help eliminate the effects of impairments. Finally, we conclude by identifying contributions, limitations, and future research opportunities.

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2. Methodology Our approach is anchored to Glaserian or classic grounded theory (Glaser, 1978, 1998, 2013; Glaser and Strauss, 1967): We entered the field without preconception, so paving the way for autonomous discovery, without knowing or presuming the participants’ problems or main concern. The investigative techniques in our work are qualitative and we use individuals’ life stories in our analysis. We were involved in teaching engineering and IS/IT to eight adult students, all practitioners with various disabilities. These eight students are considered as individual case studies. We had no experience of teaching disabled people. Through open questioning of these students during coffee breaks, we allowed the respondents’ answers to unfold freely, without the bias that may result from preconceived questions. We also conducted ten informal interviews, followed by five formal interviews, in a rehabilitation center and an international business school, both in France. After each informal interview, we started “memoing” (Glaser, 1978) and taking field notes. As proposed by Glaser (2013) for fostering the transition to discovery, we started constant comparative coding as soon as the initial interviews had been conducted. By mobilizing our theoretical sensitivity, thinking, and idea generation, we iteratively used open, selective, and theoretical coding, memoing, and constant comparison. The possibility of eliminating the effects of impairments through IS/IT and related ethical behaviors emerged from the analysis of the first set of field notes resulting from the interviews with the adult students. This guided our analysis of the formal interviews and helped us in saturating the emerging categories (Glaser and Strauss, 1967). We also did a literature review, searching the basket of top MIS journals for the following key words: “handicap,” “disability,” “disabilities,” “ethic,” and “ethical.” In this way, we investigated the creation and development of ways to help people eliminate the effects of their impairments by taking advantage of MIS.

3. Emerging Categories and Main Concern We reviewed the data collected, in which apparent ideas (codes relating to similar content) became relevant as concepts. These concepts were further grouped into categories, which started to illuminate the theory emerging from our field. In order to help clarify the concepts that emerged

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from our data, we describe the categories, the participants’ main concern, and the core category that explains the main concern.

3.1 Personal conditions in an ethical context Every human has his or her own situation (i.e. personal conditions) to cope with. Stigma is potentially present in the life of every individual. By living in an ethical context that gives them the opportunity to participate fully in social life, disabled people can manage their journey in regaining control of their body and mind more efficiently with IS/IT (see Figure 51). How do stigma and IS/IT impact this process?

Stigma

Regaining control of body and mind

IS/IT as a means to help eliminate the effects of impairments

Fig 5-1: Personal conditions in an ethical context Stigma The word “stigma” was used by the ancient Greeks to refer to a mark placed on an individual to signify infamy or disgrace. A person thus marked was perceived to pose a risk to society. Others’ perceptions of and attitudes toward you stigmatize you even if these are constructed by the society around you. Mark (60 years old) faced this situation some years ago: “Recognizing our own disability is the most difficult challenge when you see people looking at you. In 2009, I was 54 and had been a wine steward – a sommelier – for about 30 years. Burnout, divorce, a lot of alcohol: I got to the point of “I don’t give a shit anymore.” During treatment [for depression], I had a stroke. I was lucky, but I have to take pills for the rest of my life. At that time, I had no money at all; I lost my apartment, moving

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from one friend to another for the night. (…) I spent two years ‘on the dark side of the moon’ (…) You know, the song “Hotel California”: “This could be heaven or this could be hell.” (Mark)

Within the social sciences, there exists an extensive literature on the topic of stigma as it applies to people. Through its association with risk for business and society, the concept of stigma has been applied to people with a physical or a social disability. The impetus for stigmatizing nonhuman artifacts, such as technologies, is often some critical event, accident, or report of a hazardous condition (Gregory et al., 1995). Meanwhile, the devaluation of an individual’s identity can lead to a process by which those who satisfy certain criteria come to be excluded from various kinds of social interactions (Kurzban and Leary, 2001). Social exclusion is relevant in stigmatizing situations faced by disabled people, such as Thanh (man, 26 years old): “The academic advisor who does not take into account my disability, sports teachers who left me behind, and – above all – the classmate who thought I was a failure (…) My father tried to guide me in what he wanted me to do: to work directly, with the goal of self-sufficiency, and to stop being a burden to my parents.” (Thanh)

Ways of coping with stigmatization depend on how disabled people regain control of their body and their mind. For instance, in a population where severe obesity is a problem, frequent exposure to stigmatization is associated with greater psychological distress, more attempts to cope, and more severe obesity. Certain coping strategies are associated with greater distress (Heilman et al., 1992), as described by Thanh: “After graduating from high school, there followed two years of loneliness in personal objectives and career: two very long years, when I was 19 and 20.” (Thanh)

Regaining control of body and mind Regaining control of body and mind emerged as the main concern of the handicapped people that we interviewed. The relationship between body and mind has been discussed since the Greeks recognized the importance of a sound mind in a sound body to live life fully. Medicine and philosophy were already understood as being closely linked. Hippocrates said: “We cannot understand the body without a knowledge of the whole of things,” while others insisted upon the measured harmony of all elements as the conditions of maintaining and restoring health (Dewey,

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1928, p.5). Some people found resources to regain control of their body and mind, as did Mark: “The trigger for my present life? I thought I was ready to apply for work, but a social psychologist said: “No, you can’t! You’re not ready.” I was not ready in terms of having full control over myself. You know, it’s like “the mind is willing, but the body is weak.” Once I was sure that my mind and body were under control, I said to myself, “Yes, I can.” And the doctor was OK with that. (Mark)” Dewey (1928, p.4) questions how to name body and mind in a unified word and says that “if we said human life few would recognize that it is precisely the unity of mind and body in action to which we were referring.” We found evidence in our research that people with disabilities try constantly to regain control of their body and mind; being able to live life to the full is their main objective. Thierry (36 years old) said: “I don’t want people feeling sorry for me. The wheelchair is just a tool; I prefer that they see me as a competitor and fighter (…) I have tetraparesis – i.e., lack of full sensation in all four limbs (…) Before my accident, I weighed 90kg, pure muscle. I was in the army. After my accident, I went down to 76kg: a big loss within one month. Before, I lifted 100kg on the bench press. After, I lost so much strength physically that I could no longer carry a water bottle (...) I had to re-educate my mind and my muscles (…) [doing] sport more than five hours a day, for nine months, to reacquire at least an acceptable level of autonomy. Now I’m playing in the national wheelchair-basketball league.” (Thierry)

Since the beginning of the 20th century, body/mind approaches to healing have become far more accepted. There are now over 100 scientific papers on aspects of the clinical applications of mindfulness. Using the wisdom of your body and mind to face stress, pain, and illness is a way to establish greater balance of body and mind, and stimulate well-being and healing (Kabat-Zinn, 2009). Who can understand the process behind this practice better than those with disabilities? Regaining control of body and mind emerged as the main concern of all our participants. Thanh describes his typical day: “Waking up, medication. After taking the medication, I went straight back to sleep. I had to travel for an hour to get to high school. Classes would start, but I would yawn and feel as if I wasn’t awake because of my

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medication. I tried to keep up, but I would focus on trying not to have a seizure, since I might do so in class, depending on the day or level of fatigue. It was frightening. In high school and middle school, I had several seizures in the classroom (partial ones). In the evening, as I was tired, I used not to do my homework properly. (Thanh)”

Gaining control over body and mind is the main activity for many disabled people over long periods of time. In their situation, they have to control themselves, their actions, and their own attitudes. But the control can be lost again – as one of our informants, who wished to remain anonymous, described: “Sorry, Sir, but when I lay my head on the table, don’t get me wrong please, it’s not because of you. I currently have trouble with my illness. I feel like my head is going to explode.” (Anonymous man, 35)

Another person, who had real potential, wrote in an email: “Hi colleagues, I’m so glad that you’re okay. I had a relapse; things got worse again. Unfortunately for me, the adventure ends here; you will not see me again.” (Anonymous woman, 55) Eventually, most people manage to find a balance between their health and their place in society, as Thanh describes: “So, for all the class time, I had to show rigor and flawless tenacity: No forgetfulness in three or four years, but that does not mean I didn’t have any seizures. And I had to control myself not to do so when I felt that a seizure was about to come. I didn’t want to miss my time: I had a goal that gave me a real insight and a future vision. Belief, self-esteem, support from relatives, and perseverance are true assets for the success of a course. I realized over the years, and through the people I met during that time, that I could do more. And it was never already in the bag. Now, my health problems are no longer a major obstacle in my life, and I have realized that my ambition is huge, and that the best way to achieve it is to go step by step and be convinced that this is the right choice. I still take my medication, but it is no longer mental torture.” (Thanh)

3.2 Disability as a dynamic interaction There are many types of disabilities. According to the World Report on Disability (WRD, 2011), disability is complex, dynamic, multidimensional, and contested. Researchers from the social and the health sciences have identified the role of social and physical barriers in disabilities. The

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transition from an individual, medical perspective to a structural, social perspective has been described as the shift from a “medical model” to a “social model.” These two models are often presented as dichotomous, but disability should be viewed neither as purely medical nor as purely social. The WRD defines disability as resulting “from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (WRD, 2011, p.4). Hence, one may understand functioning and disability as resulting from a dynamic interaction between health conditions and contextual factors, both personal and environmental (see Figure (5-2).

Health condition

Contextual social factors

Fig 5-2: Disability as resulting from a dynamic interaction Defining “disability” as resulting from an interaction means that it is not an attribute of the person. In other words, when meeting a person, and by interacting with that person, a categorization will instantly be made. We met Thanh and had no clue about his disability until he said more about it: At the age of 11, I had my first seizure. I was in sixth grade, my first year at middle school. The seizures took a different form from now. One month after I met my first neurologist, the diagnosis was clear: epileptic seizure. This was then followed by immediate treatment with two highdosage anti-epileptics. You should be aware that I have had problems throughout my schooling, because of my seizures and the adverse effects of anti-epileptic drugs. I was meant to take my anti-epileptic drugs at fixed times, morning and evening, but at that time I was becoming adolescent and so the anti-epileptics were not taken regularly. My parents were there to keep an eye on me, but I didn’t have the maturity to take the drugs

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correctly (…) As my studies moved on, I became resistant to antiepileptics and so I had to increase the dosage or change to another neurologist. Eventually, my body, the fatigue, the effort, and the denial of school supervision weighed heavily on my motivation and my school results. (….) At the medical level, we still don’t know where the seizures come from (known as “cryptogenic epilepsy”).” (Thanh) Now that we know more about Thanh, how do we first interact with him? The first action is to say, “Hello.” Eric Berne (1975, p.22) writes: “How do you say Hello? This is the secret of Buddhism, of Christianity, of Judaism, of Platonism, of atheism, and above all, of humanism. The famous sound of one hand clapping in Zen is the sound of one person saying Hello to another, and it is also the sound of Golden Rule in whatever Bible it is stated. To say Hello rightly is to see the other person, to be aware of him as a phenomenon, to happen to him and to be ready for him to happen to you.”

The disability results from this interaction and from categorization. Two basic principles are proposed for the formation of categories (Rosch, 1999): The first relates to the function of categorization systems, and asserts that the task of such systems is to provide maximum information with the least cognitive effort; the second relates to the structure of the information so provided, and asserts that the perceived world comes in the form of structured information through attitudinal and environmental aspects, rather than as arbitrary or unpredictable attributes. The maximum information with the least cognitive effort is achieved if categories map the perceived world structure as closely as possible. People with impairments will be categorized even if their disabilities are complex, dynamic, and multidimensional. What would be the categorization based on the following email? “Dear Sir, Please find enclosed my resume and covering letter. I would be pleased to discuss further ideas. Best regards, Mr …” (Thibaud, 24)

3.3 Ethics of people and institutions Since 1987, French companies with more than 20 employees have been obliged to ensure that people with physical disabilities represent at least 6% of their workforce. People with disabilities are often dependent on other people or institutions to help them in everyday life. Impairment perception impacts our attitude toward disabled people (see Figure 5-3).

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Institutions must learn how to think of disability from an inclusion-based rather than an integration-based perspective.

Impairment perception

Attitude toward disabled person

Fig 5-3: Ethics of people and institutions Inclusion-based perspective versus Integration-based perspective We define an inclusion-based perspective as a system of people and institutions where equality and difference have their place, exclusion is avoided and diversity is the norm but not preconceived. There are no groups of people with and without disabilities. All people have common and individual needs. This perspective can be achieved by changing the existing structures and opinions. The definition of disability as resulting from an interaction between the person and the environment brings normality to everyone regardless of disability. In contrast, an integrationbased perspective means mostly that people with differences have to adapt to so-called “normal” systems. In the integration-based perspective, “actions” on body (surgery, prostheses, medication) and / or disabilities (rehabilitation, assistive technologies) are the main drivers reducing the gap and allowing people in some instances to be part of the "normal" society. But disability remains a source of differentiation (see Figure 5-4). It is therefore important that people and institutions behave in an ethical way, developing the capacity to eliminate disability. We hear regularly that “ethics is a matter for everyone.” Therefore, we do not distinguish between the individual and institution. Norbert Elias (2001) opens his book The Society of Individuals with these words: “The relation of the plurality of people to the single person we call the “individual”, and of the single person to the plurality, is by no means clear at present. But we often fail to realize that it is not clear, and still less why. We have the familiar concepts “individual” and “society”, the first of which refers to the single human being as if he or she were an entity existing in complete isolation, while the second usually oscillates between

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two opposed but equally misleading ideas. Society is understood either as a mere accumulation, an additive and unstructured collection of many individual people, or as an object existing beyond individuals and incapable of further explanation. In this latter case the words available to us, the concepts which decisively influence the thought and action of people growing up within their sphere, make it appear as if the single human being, labeled the individual, and the plurality of people conceived as society, were two ontologically different entities.”

Figure 5-4: inclusion-based perspective versus integration-based perspective (Adapted from Francosourd, 2013) Again, ethics is a matter for everyone. But what is ethics? A famous search engine returned 125,000,000 results for the keyword “ethics” in just 0.21 seconds. Enough books and articles have been written about ethics to fill several libraries; these cover diverse areas and domains, such as ethics in management, ethics in science, ethics in devices, ethics and animals, ethics and compliance, ethics and political sciences, the world’s most ethical companies (Ethisphere, 2013), etc. In our research, and based on what emerged from our data, we adopt the proposal of Walsh, who identifies the key factor in ethics as the intention that underlies a behavior – i.e., the intention and motivator that drives an action (Walsh, 2010); Walsh refers to Prophet Muhammed saying: “Our actions are judged good or evil according to our intentions” (Faisal Zia Siddiqui, 2004, p.11). Therefore, our understanding of ethics is based on wellbeing: An intention is ethical when the person’s goal is to perform an action that aims at collective wellbeing (Spinoza and Delègue, 2001) – i.e., that has the goal of extending the welfare and wellbeing of everyone, including the individual himself or herself. The last words (“himself or herself”) are important, because otherwise the attempt to behave ethically may be considered as self-sacrifice. However, many people in Western cultures do

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believe that ethics is above all about self-sacrifice. So what about the perception of disabilities? How do people and institutions respond to people with disabilities? What is their attitude to disabled people? Impairment perception Institutions sensitize people to the social issue of disability through different means and specific events. These actions relate to the accessibility of both physical and intangible facilities. The support needed depends on the situation. Perception is the organization, identification, and interpretation of sensory information in order to represent and understand the environment (Schacter et al., 2011). To perceive something is to become aware of it directly through any of the senses, especially sight or hearing: “As soon as I perceived him, I knew that he was the man for the situation” is slightly different from “As soon as I saw him, I knew that he was the man for the situation.” Our perception is different when we face people with disabilities. A physical disability is easiest to identify visually, but for all types of disability – motor, sensory, psychiatric, cognitive, or social – perception is a way of categorizing the individual according to comparative criteria. Today, despite disability being widely discussed everywhere, it is too often associated with the extremely restricted image of a person in a wheelchair. Yet only 20% of disabilities are visible. While disability can manifest itself in many forms, it is still the case that few people with disabilities declare themselves as such to other people or institutions, in an attempt to avoid stigmatization. Attitudes toward disabilities “Disabled people are not strong enough to work on important matters, such as long-term projects” was a view we heard from several managers – “off the record” of course. This could be just another stereotype, a thought that can be adopted about specific types of individuals or certain ways of doing things (McGarty et al., 2002). Attitudes are learned predispositions to respond to an object or class of objects in a consistently favorable or unfavorable way (Allport, 1935). Attitudes are global or overall evaluative judgments (Blackwell et al. 2006). An attitude can be negative or positive, a “like” or a “dislike” as people experience it with digital networks. Attitude is an observable psychological construct, which can manifest itself in relevant beliefs, feelings, and behavioral components. Attitudes are feelings or

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predispositions held by people or individuals toward something or someone. Mark faced these attitudes positively: “I met people telling me that I should teach English in schools and companies. They did not care about the fact that I haven’t got the adequate degree. Even my personal health situation, which everybody could see, wasn’t an issue. They told me: “Mark, the way you teach is the way we want to learn English.” Since then, I have been working as an English teacher for international companies, a Foreign Language Institute, the European Parliament, and the European Council. Really, I’m so happy.” (Mark)

It is customary to work on stereotypes by confronting stakeholders with the most common misconceptions about disability. The level of comfort in interacting with disabled people varies, depending on both the impairment type and the scenario in which the interaction takes place. People with no disability say they would be very or fairly comfortable to interact with people who have sensory or physical impairments. Meanwhile, prejudice toward people with mental health conditions and learning disabilities is considerably higher, and varies more depending on the scenario in which people interact with the disabled person (Department for Work and Pensions (DWP), 2011). Attitudes are seen to play a key role in achieving equality, because they may translate into behaviors toward individuals and groups in society with different consequences. For example, Carole Schmitt, Project Manager for Training and Integration in a French rehabilitation center for the last five years, is recruiting disabled students for one of the only French engineering degrees dedicated to people with disabilities. She says: “We must adapt our situation to every disability. We work closely with our internal management on each new application. It’s obvious to us, because in no way will we let our students fail in business. Our role is to link institutions with people who have made their life a wonderful thing, achieving an engineering degree; highlighting their skills instead of their impairment is our goal.” (Carole Schmitt)

People’s attitudes to those with disabilities are linked to their knowledge of the subject. Thus, it is often presumed that negative attitudes and behavior come from people who do not have adequate knowledge. Carole Schmitt says: “People may avoid those with mental health conditions because they think they are prone to violence, even though this is not true.” Therefore, public attitudes and perceptions are regularly

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reported as barriers to achieving equality (DWP, 2011). This can apply to even the closest family members, as Thanh explains: “In the end, my parents left me to make my own decisions and, as I had the opportunity to enroll for a diploma in automotive and industrial computing, I seized that opportunity. My parents remain the main people who have helped me succeed. During the two diploma years, I gained advice from my teachers and flawless parental support (I had a period of shoulder dislocation, followed by shoulder surgery). My friends were there and visited me. My teachers believed in me and told me that I should enroll for the bachelor’s program. I still wasn’t convinced. I started talking to my friends and to my parents about that opportunity. They immediately advised me to enroll.” (Thanh) According to our data, initiatives such as dinners in the dark (to show people what it is like to be visually impaired), wheelchair-racing events in pairs, and opportunities to exchange views with people with disabilities have increased in institutions. An anonymous source said: “The cost of this action is supported by our partners. These partners are world-renowned companies. This is an opportunity for them to hire people with a high level of knowledge, often for management positions. Human attitude is a core concern and we are working on courses adapted to each of our employees. It is important for us not letting these people down.” For Thibaud, the positive attitude around him helped him throughout his studies: “I have a mobility impairment. During my high-school studies, I received help from special-needs assistants. This allowed me to receive all my schooling in mainstream schools up to the baccalaureate. The difference has been radical at college. The only support I was offered was for a teaching assistant to give me photocopies of the course materials. This system has been relatively efficient, but there is still room for improvement. In fact, the move to college is radical and difficult, especially as the early grades are known to be difficult for everyone. Personally, it has allowed me to gain autonomy. But I might have expected a more appropriate compromise (…) I think that the key message to get across is that disabled students can succeed and be well integrated through the combined actions of all the people around them. My classmates and teaching staff help me a lot, as well as the local Mission Handicap [disability support] association. But the initiative has to come primarily from the disabled person (…) So I hope to have the same success in

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finding a job. Although I have no clear career idea so far, I have thought about management or audit and control positions in medico-social institutions, or even in logistic firms.” (Thibaud)

3.4 IS/IT as a means to help eliminate the effects of impairments To hide or to show oneself: This is the dilemma that came up several times during our research. How can disabled people find their place in a world in which perceptions and attitudes drive and control society? With IS/IT, we are on the way to achieving a better quality of life for everybody, in an ethical way, whatever disability a person may face. Thus, IS/IT impacts society as a whole. IS/IT as a means to help eliminate the effects of impairments emerged as the core category in our substantive field, and it works. We discovered this core category by following Glaser’s (1998) list of criteria, consciously looking for a core variable when coding our data. We constantly compared incidents and concepts, and generated many codes, looking for the main theme. We kept asking ourselves: What is going on here? What is the main concern or problem for the people? Which categories bring out process and change? In this way, regaining control of body and mind with IS/IT was identified as central; it reoccurred frequently in the data and came to be seen as a stable pattern, while becoming increasingly related to other variables. It relates meaningfully and easily with other categories. While allowing for variation in the problematic behavior, a core category is also a dimension of the problem. How, therefore, is IS/IT linked to ethics and disabilities? Ethics and IS/IT Capurro wrote in his work Digital Ethics (2009) that, since the second half of the last century, computer scientists (such as Wiener and Weizenbaum) called the public’s attention to the ethical challenges immanent in computer technology; these can be compared, in terms of their societal relevance, to the ambivalent promises of nuclear energy. Realizing that the community understood these words as applying to computer experts’ behavior, in other words focusing on the moral responsibility of computer professionals only, showed us the challenge we still face. More than 50 years have passed and, following Wiener and Weizenbaum’s predictions, the impact of IS/IT now concerns society as a

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whole. Whereas “information ethics” in a broader sense deal with information and communication including (but not limited to) the digital media, “digital ethics” or “information ethics” deal with the impact of digital ICT on society and the environment as a whole, as well as with ethical questions relating to the Internet’s digital information and communication media in particular (Capurro, 2009). Capurro’s message is that ethical reflection can and should contribute to addressing – and finding sustainable solutions to – the technological challenges of the digital age. Further, digital ethics should address the issue of the human right to communicate, as the Internet has become an infrastructure for local and global social communication at a basic level. However, another message given by Capurro is that unrestricted access to the Internet cannot only foster peace and democracy, but also be used for manipulation and control. Peer-reviewed journals have been established that are dedicated to advancing the dialog between moral philosophy and the field of IS/IT. Ethics and Information Technology (ranked C), the Journal of Information, Communication and Ethics in Society (ranked C), the Journal of Information Ethics (ranked B), and the International Review of Information Ethics (ranked C) claim that they aim to foster and promote reflection and analysis, which is intended to make a constructive contribution to answering the ethical, social, and political questions associated with the adoption, use, and development of IS/IT. The main topics covered are intellectual property, privacy, security, information overload, digital divide, gender discrimination, and censorship (Ess, 2013; Himma and Tavani, 2008). As Mingers and Walsham (2010) show, a wide range of ethical issues is important to the practice of IS management, such as codes of ethics for IS practitioners, issues of privacy and security, fighting cybercrime, intellectual property disputes, free and open software, hacking, and the digital divide as a form of social exclusion. These authors mention that such issues are discussed in the existing literature, but they argue that the core MIS field, based on publications in journals such as Management Information Systems Quarterly, is under-representative of ethics and IS/I, bearing in mind the importance of this subfield. Disabilities and IS/IT For the WHO, disability is not just a health problem. People with disabilities have the same health needs as non-disabled people. The WHO and the World Bank have jointly produced:

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“The first ever World report on disability (WRD), that provides the best available evidence about what works to overcome barriers to health care, rehabilitation, education, employment, and support services, and to create the environments which will enable people with disabilities to flourish (WHO, 2011).”

The report ends with a set of recommended actions for governments and their partners. Using the 350-page WRD, we searched for the term “technologies” or “technology”; we found that “technology” was used only in the case of “rehabilitation measures,” such as “assistive technology,” defined (p.125) as “any item, piece of equipment, or product, whether it is acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities.” In no way has IS/IT been envisaged as an opportunity to help eliminate the effects of impairments, the barriers that hinder disabled people’s full and effective participation in society on an equal basis to others – in other words, in an ethical way. That is why environmental factors, referring to the physical, social, and attitudinal environment in which people live – for example, products and technology, the natural environment, support and relationships, attitudes, services, systems, and policies – must be more closely taken into account. A Digital-life-enhanced Basic Social Process During our research, we found that people with disabilities wish to live their professional lives in the same way as everybody else. The question is: In some instances, how can IS/IT help eliminate the effects of disabled people’s impairments? IS/IT gives people with disabilities not only the opportunity to use assistive technology, but also the opportunity to act from a professional standpoint, as other people can. Thierry said: “IS/IT is, for me, an opportunity that helps in stabilizing me, rebuilding me, and moving me on in life. Today, IS/IT is my job and hopefully will still be my job in the future; there are so many things to do with IS/IT, progress everywhere, joy and pleasure. I would really like to develop more into one of these domains and become an expert, even with my disability.” (Thierry) On one hand, behind a computer screen, nobody can see the reality of a disabled person’s life. On the other hand, IS/IT gives disabled people the opportunity to show themselves to the community:

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Chapter Five “Yes, I agree, it was great to be part of the company communication about their disability initiatives (…) Cool to see myself on the group photograph on the corporate web.” (Thierry)

In both respects, more than just an assistive technology, IS/IT is becoming an extension of the person’s body, helping to eliminate the perception of their disability by other people. Mari is a pre-teen, a period of life in which body and mind undergo considerable change: “I can’t control my stuttering in front of all my friends (…) My girlfriend has a deformed face; for her, it is even worse with boys. And my other girlfriend has a hearing aid she hides with her long hair. With my smartphone, when I “talk” with my friends on Facebook, it’s so simple! Nobody looks at me oddly. I could not do without it any more. Here, look, did you see my new avatar? She’s beautiful, isn’t she?” (Mari, aged 11)

With “24/7” connectivity, we can be in touch with anybody, anywhere, at any time. Hence, it helps eliminate the effects of any impairment, even if some people may be finding it more difficult than ever to feel well and at ease with them. Above, we have noted the beginning of a movement, which is constantly being updated with new figures: a digital-lifeenhanced basic social process (BSP). This BSP has emerged through our grounded-theory research, with theoretical codes emerging from previous models and constant comparison (see Figure 5-5). The objective of grounded theory is to generate a theory that accounts for a pattern of behavior that is relevant and problematic for those involved. The goal is not voluminous description, nor is it clever verification. As with all grounded theory, the generation of a BSP theory occurs around a core category (Glaser and Holton, 2005). According to these authors, BSPs are ideally suited to generation by grounded theory from qualitative research, because qualitative research can pick up the process through fieldwork that continues over a period of time. We found evidence in our data that the process of eliminating the effects of impairments through IS/IT continues over a period of time. BSPs are processual – in other words, they “process out”; they have two or more clear emergent stages. A BSP is like a workflow, a flow in which the activities worked on – the stages – must be managed by people impacted directly or indirectly by events from their context and from their lifecycle. IS/IT is still a dream for a lot of people. When asking why they turned to IS/IT, they answered fast, with stars in their eyes, like Thierry:

Information Technology to Help Eliminate the Effects of Impairments “It’s magic! It’s real, but not real. IS/IT and computers allow me to see tomorrow, to project myself into a social, professional, and more fulfilling personal life.” (Thierry)

Figure 5-5: Digital-life-enhanced BSP

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Others turned to IS/IT especially strongly. Cyrille (woman, 40) had been an ingenious landscape gardener and became a successful IT engineer: “I’m working now as an engineer in information systems, in a French company in Paris. I had the chance to go on the first engineering degree program for disabled people organized by the school, the Conservatoire National des Arts et Métiers (CNAM). In my previous life, I was a head gardener, but saw my career switch after a work accident. Because of my disability, I could not stand all day any more. When IS/IT classes were offered to me, I took up the challenge, even though I had to start again from scratch with all my qualifications. In fact, I was not even at the level of graduating from high school! IS/IT is a constantly changing world; you never stop learning and its creativity suits me well. Our domain has the advantage of being cross-domain; it is about computer networking as well as about daily business support. I’m passionate about my present job. I never thought that I would practice “architecture” on IS/IT instead of gardens. By the way, I did not stop there: In the meantime, I gained another, specialized master’s degree, this time about personal data protection in distributed information systems.” (Cyrille)

Those who succeed in regaining control of body and mind have a positive influence on the perceptions that others may have about their impairments, even eliminating their effects completely, and so eventually changing their overall attitude toward disabled people. This process is still going on for Thanh: “The people I’ve met have played an important role in my decision-making strategy (…) I started my engineering degree course from the CNAM with the goal of getting ahead professionally. As you know, the engineering degree was conducted in partnership with the company Alcatel-Lucent, the rehabilitation center in Mulhouse, and with passion: I invested effort every day in order to succeed in my mission, and I did it. ICT was certainly the area that interested me professionally. During my research on ICT trends, which started at the end of my engineering degree, I discovered that a specialized master’s degree in cloud computing can be done by a disabled person like me, with grants or subsidies. I spoke with enthusiasm about it to my supervisor at Alcatel-Lucent. I stopped speaking about it, as I was receiving no feedback, but I completed the admission procedures on my own initiative. The starting date for the specialized master approached. I mentioned it again to my supervisor: He could see that I had progressed with the paperwork and that – as much as any other subject – cloud computing would become an important topic for the company. He said “OK, let’s do it together.” And that’s how I came to Paris, without having to look for a new job. I just continued in the same company, where I

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already worked. Showing that you have ambition and that you have started the process to realize it will prove to others that they can count on you (…) even when you are disabled.” (Thanh)

4. Conclusion 4.1 Contributions First, we contribute to the literature about IT ethics by introducing the conceptualization of a digital-life-enhanced BSP model that explains the main concern of disabled people: How can we regain control of our bodies and our minds, and live like other people do? IS/IT is a means to help eliminate the effects of disability, and thus to contribute in regaining control of body and mind. IS/IT is perceived by disabled people as an opportunity to participate fully in life regardless of their disabilities. It sheds some new light on IS/IT usage by disabled people. It provides some new clues on IS management, by taking into account all the ethics-related aspects of working together for everybody’s wellbeing. IS/IT is now “everywhere” (Nolan, 2012), and needed in every context and situation (Walsh, 2013); everybody is part of an IS. The research question that emerged was: How can IS/IT help eliminate the effects of disabled people’s impairments? In our work, based on Glaserian grounded theory, we found evidence that IS/IT is a means to help eliminate the effects of disability. On the practical side, we have shown how the constant interaction between health conditions and social context is a starting point for analyzing people’s main concerns. Further, the perception of impairments by others, together with their attitude to disabled people will influence the level of stigma – and hence how such people can regain control of body and mind, ultimately by using IS/IT or by becoming involved in the IS/IT field.

4.2 Limitations From a methodological perspective, the main limitation of our research is the fact that the population was a small group of people. A larger number of disabled people could be interviewed in the rehabilitation center, especially those not studying for an engineering degree. Furthermore, a quantitative questionnaire could be administered to populations, respecting the natural demographic and social mix found naturally in the place in which it was being tested. We would distance

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ourselves completely from the qualitative approach by feeding our analysis with individuals’ life stories (Corbin and Strauss, 1990) – but, as “all is data” (Glaser, 1978), more new categories would perhaps emerge. It would be interesting to investigate disabled populations from different countries and to compare the results obtained.

4.3 Future Research This emerging vision of IS/IT could prove valuable and be further investigated within various fields of research, including IS, humanresource, and education management. The reasons to use IS/IT through the construct addressed by Walsh (2013), individual IS/IT culture, global IS/IT needs, contextual IS/IT needs, and situational IS/IT needs could also be addressed in future research. Indeed, it is clear that disabled people experience IS/IT as having positive as well as negative aspects. Perhaps we are all disabled in some way, as one of our interviewees suggested: “I’m on the threshold of my 60th birthday and I’m still an English man in France. I’ve been in love for a year now and am finally healthy. But I’m IS/IT-impaired. I must use it because that’s what happens these days. You can either refuse to learn – refuse the future – or you can embrace it by using it and asking: “How does it work?” However, some people hide behind a computer; they don’t like life. I need to live with IS/IT. As I said, I can live without IS/IT, but I’m forced to live with it! In 2009, when I started teaching, I started to see what the computer – as a tool – meant to the kids in front of me. I didn't say, “Shut it down.” So what you do is you use the student as a tool to learn that language, their language. You ask them: “What do you actually do on the computer?” Their impairment is their inability to comprehend the idea that someone else – like me – doesn’t understand what they do. So you use the student as the tool to understand your skills gap. And, finally, students begin to enjoy getting someone like me to understand. You know, it’s not like you’re giving them an order. I explained to them: “I really want to know!”” (Mark)

As Mingers and Walsham (2010) mention, the founders of cybernetics – such as Norbert Wiener (1950) – recognized that the developments within automated control systems and computing would have profound effects on human society. These founders tried to deal practically with emerging issues so as to ensure human wellbeing. More recently, the

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question of the ethical or moral aspects of the design of IS artifacts1, such as software, has been addressed by van den Hoven (2008). The extent to which systems inevitably embed particular values that have a moral impact without this being either deliberate or even recognized has been highlighted – as has the importance of designing systems that will positively embody certain values or help us avoid moral dilemmas. The analysis of social and ethical trends within societies – including those related to innovation and information technology – may help highlight new behavioral norms (CIGREF2, 2010). In their research agenda, the members of CIGREF’s scientific committee call for research to investigate the social dimension of IS/IT usage as it is of critical importance, including for managerial purposes, especially by looking at emerging practices and rules. This might reveal emerging ethical values of potentially high impact for decision-making. We believe that our research could help to reveal such emerging ethical values. A final quotation from Mark: “Reality runs up your spine/ And the pieces finally fit.” This is from Elton John’s “The One.”

1

We consider artefacts as products of human action that exist independently from their creator, and that aim to resolve a problem or to satisfy a need, constituted by their materiality (Gagliardi, 1990). 2 CIGREF is an association that brings together the chief information officers of the top 100 French firms, advised by a scientific committee of international researchers.

CHAPTER SIX IS/IT CODES OF ETHICS AND USAGE: A COMPARATIVE ANALYSIS OF THREE UNIVERSITIES’ CODES GILBERTINE IKILI OSSANA AND MARC FAVIER

1. Introduction Over the last few decades, studies on IS/IT issues have increased and attracted the attention of researchers and practitioners (Heersmink et al., 2011). Findings agree upon the fact that they have enhanced the competitiveness of organizations by radically changing the production processes and the way they learn and communicate. In fact, powerful technologies have always triggered important ethical implications with for instance computer technology which is one of the most important and flexible technologies to have ever existed (Bynum and Rogerson, 1996). As the law of Moor implies: “the more technological revolution increases its impact on society, the more ethical problems there are. This phenomenon occurs when new opportunities of actions (usages) are permitted, and actions (uses) for which ethical policies have not yet been developed” (Moor, 2005).

Consequently, users must inform themselves on the ethical, legal and social issues related to these technological revolutions (Bynum and Rogerson, 1996; Huff and Martin, 1995; Kallman and Grillo, 1993; Maner, 1996). In other words: IS/IT provides new capabilities and these in turn give new choices for action, some of which can be categorized as IS/IT “misuse” or “unethical” uses within organizations. According to Langford (1995), ethics encourages individuals to reflect on their attitudes and beliefs, and thus be able to decide beforehand if their actions/opinions are appropriate or not, hence being fully prepared to take all the responsibility for their actions. This brings us to question what is

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the relevance of ethics in the framework of our field of investigation concerning the use of IS/IT in organizations? Since the adoption of the Sarbanes-Oxley Act (SOX), MIS professionals have been confronted with varied challenges to provide reliable information while ensuring confidentiality and security of assets for their organizations (Damianides, 2005). To cope with issues related to IS/IT “misuses”, a variety of measures have been instituted and enforced such as information management standards, secure systems design methods, security policies implementation and development of practices (Siponen, 2005; Dhillon and Backhouse, 2001; von Solms & von Solms 2004 ; Dhillon, 2006 ; Oscarson, 2007; Whitman, 2008). Among which we identify IT or IS use codes of conduct. Its purpose is to influence the behavioral use of IS/IT (CNIL, 2002; Herath & Rao, 2009; Karyda et al., 2005). Organizations hoped that by putting in place an IS/IT code of conduct, they could maintain or improve their public image which is essential in order to maintain the trust of communities, clients, society as a whole. The use of IS/IT codes of conduct is to establish a set of behavioral standards, increase performance, strengthen the work environment and decrease the amount of potential fines if transgression occurs (Kaptein & Schwartz, 2008). In the context of studies carried out in business ethics, researchers have examined the ethical codes in order to identify ethical issues as well as accepted and prohibited behaviors within the organization (Winkler, 2011; Wood, 2000). The different types of “code of conduct” are regarded as one of the means established to foster the "good" use of the IS/IT within organizations. Very few specialized Information Systems journals deal with this topic. One of our purposes is to focus on the comparative analysis of IS/IT use of code of conduct. This is done in the hope that these universities will try to include ethical issues when formulating their policies and eventually come up with a tool that could evaluate if a policy is ethical or not. We will try to answer the following question: Can IS/IT use of code of conduct be acknowledged as a code of ethics? To achieve our goal, we suggested using the framework analysis suggested by Johnson in her book Computer Ethics in 1985. This framework has been previously used by Oz (1992, 1993) in two of his studies. Unlike Oz, the framework analysis is applied to IS/IT use of codes of conduct in this study, as, reviewed literature has not shown similar studies. For the sake of confidentiality, none of the universities’ names will appear. This paper is organized as follows: a brief review of the

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various studies carried out on ethical codes analysis and on IT or IS use of code of conduct. The rest of the paper will include applied methodology, results and conclusion.

2. Literature Review Ethics is defined as a set of beliefs about right and wrong behavior within a society. Ethical behavior conforms to generally accepted norms— many of which are almost universal (Reynolds, 2009). Ethics differs from law, in that law is designed to reflect the attitudes of a society and its desires concerning the culture in which the society wants to exist (Raiborn, & Payne, 1990). An ethical behavior or unethical behavior occurs after an ethical dilemma (Bommer et al, 1987; Paradice 1990; Trevino, 1986). There is a long standing tradition according to which “ethical behavior” is considered to be morally correct via appeal to a theory of morally correct (or permissible, obligatory, desirable, etc.) action, and that is “ethical” precisely because it is the behavior which is required by the theory (Bommer et al, 1987). Several ethical theories such as Utilitarianism, (Betham, 1976; Mill, 1895), universal prescriptivism (Hare, 1981); deontologism (Kant, 1993), emotivism (Stevenson, 1944); intuitionism (Ross, 1930) and virtue ethics have been identified. It seems that the teleological or utilitarian theories are preferred when it comes to describing business ethics (Shanahan & Hyman, 2003). Utilitarianism deals with the belief that actions are right when they produce the greatest good for the greatest number of people. Several studies on IT ethics aim at clarifying if IT ethical issues are “unique “. Moor (1985) argues that IT have generated “unique” ethical issues as IT are "logically malleable" and provide new opportunities for ethical behavior. Maner (1996) acknowledges that IT gave birth to new ethical behaviors and favored unique ethical dilemmas. According to Heersmink et al. (2011), the period going from 2003 to 2009 is considered as being the most representative of the recent development of the ethics applied to IS/IT. During the 1990s, attention was turned toward professional ethics (Gotterbarn 1991; Oz 1992; Walsham 1996), trying to define the daily practice ethical codes for computer system developers. A code of ethics is generally defined as a written document, distinct, and formal, which is composed of moral standards that guide employees on their behavior within the organization (Hosmer, 1991; Schwartz, 2001; Stevens, 1994). In other words, the ethical code by its very definition suggests the representation of normative guidelines allowing the regulation of

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individual behaviors. Most of the studies conducted on codes of ethics are focused on the content analysis, the influence or the impact on employees’ behaviors (see Winkler, 2011; Trevino et al., 2006; Pierce & Henry, 2000). In the reviewed literature, two studies have caught our attention: the first one was carried out by Oz (1992, 1993) within corporate information system organizations whose aim was to suggest a unique code of ethics. The study conducted by Schwartz (2002, 2005) revealed six universal values to which a vast majority of businesses are subject: fidelity, respect, responsibility, equality, citizenship and concern for others. The development and the application of codes of ethics promote the ownership of standards and the acquisition of appropriate behaviors (Johnson, 1997). The development and respect of the code of ethics also increase public trust. Each employee is aware of his/her obligations toward the organization, the company or the employer, and will therefore be fully accountable if an ethical dilemma occurs (Oz, 1993). What role is the IS/IT use of codes of conduct expected to play within the organization? The literature reviewed allows us to identify the IS/IT use of codes of conduct as having for main goals to regulate the use of IS/IT within the organizations. Advocated by the CNIL (in France), the IS/IT use of codes of conduct has imposed itself as one of the tools for regulating IT/IS uses within organizations. The CNIL supports the initiative when these "codes" or "guides of good practices" are aiming to ensure a perfect information for users while raising awareness among employees or public officials to safety requirements, and drawing their attention to some exhaustive behaviors (CNIL, 2002, p.4). IT specifies the security measures to be taken and the appropriate use of the IS/IT tools made available to the employee. The codes cover a variety of topics such as: acceptable uses, access control, continuity of service, the use of the internet, confidentiality, network security, physical resources security, etc. (Greene, 2006; Metzler, 2007; Rotvold, 2008; Verdon, 2006). These codes also refer to a law which guarantees their legitimacy. They should be understood and respected by all so that organizational data is not compromised (Nelson et al., 2006). Some authors agree to the fact that one of the critical roles played by this code is to be able to explicitly define rights and responsibilities of users, and finally to communicate them with success to each employee, in terms of clarity, coherence and efficiency (Hone and Eloff, 2002b; Hong et al., 2006; Rees, Bandyopadhyay and Spafford, 2003).

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. According to Herath and Rao (2009) behaviors related to the "proper" use of computers and network resources, the choice of passwords, etc. which cannot be addressed by the IT security are often presented in these policies (IS/IT use codes of conduct). They have been identified as managerial measure to deter IS/IS misuse (Chen et al, 2008) and have been assuming several roles : providing means for accessibility, confidentiality and integrity of resources in the organization (Baskerville and Siponen, 2002); improving efficiency of practices developed and adopted by users (Tyre and Orlikowski, 1994; De Vaujany, 2000 ; Whitman, 2004); formalizing "bilateral" existing ethical principles of IS/IT uses related to monitoring issues; to the use of resources for personal purposes and to the protection of privacy (Bouchet al., 1999 ; Mercier and Coulon, 2002 ; Isaac, 2003 ; Dhillon, 1999); and finally defining rights and obligations of each user (Hone and Eloff, 2002 ; Von Solms and Von Solms, 2004). During the review, we found out that in comparison with the long-standing and extensive stream of literature addressing other forms of information security documentation, and in particular the information security policy (e.g. Doherty & Fulford, 2005; Straub & Welke, 1998; Karyda et al, 2005; Bulgurcu et al., 2010…), the literature that explicitly addresses the IT/IS use code of conduct is still rather immature (Doherty et al, 2010, p. 203). Also, most of studies had focused on the formulation, diffusion and adoption process; others on content analysis (structure,) but none of them used the IT ethical theory lens when analyzing usage rules promoted by organization through IS/IT code of conduct use. Lichteinstein (2011) even adds that an overlooked but important influence on the effectiveness of IT/IS use codes of conduct is the perspective taken on the ethical issues involved. It has been recognized that ethical behaviors are not only influenced by individual factors such as values, age, religion and schooling; the presence and management of a code of ethics in place in the organization also have an impact on the attitudes and behaviors at work (Trevino et al., 2006; Schwartz, 2004). Consequently, firms must focus on developing a code to facilitate managers’ tasks when it comes to tagging ethical behavior to adopt at work (Durif et al., 2009). A code of ethics also provides a context for behavior by contributing to an organizational climate in which ethical behavior is expected and encouraged. Throughout the articles and texts studied, IS/IT use of codes of conduct has been named and defined in various ways. It is known as computer use policy (Foltz et al., 2005); as IS security policies and guidelines (Warman, 1992); as acceptable use policy (Doherty et al, 2010); as internet acceptable use policy (Lichteinstein, 2011); as Technological use codes of conduct (McGuill and Baetz, 2011) and so on. Although named

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differently, they have all been implemented by organizations for the same main motive which is: influencing users behavior so they will “properly use” IS/IT resources available to them. IS/IT use of codes of conduct are generally addressed to different user profiles such as those who master IT tools and others who are less comfortable whatever the causes might be (generation, age, profession…). In this study, we define IS/IT use of codes of conduct as: a set of documents or a written statement that mention its principles, its rules of conduct, its moral positions and define standards for the “appropriate use” of IS/IT resources, to ensure confidentiality, integrity, accessibility, intellectual property of the data and specify rights and obligations of all actors using IS/IT organizational resources.

This definition has been inspired by the literature reviewed for the topic. The content of this code is crucial for the organization, as it can have influence on the behavior of employees by changing their perception of the morality of an action (Lere and Gaumnitz, 2007).

3. Methodology The case study approach is adopted here allowing us to discover and interpret rather than validate certain hypotheses. The ‘Case study’ is widely recognized by the scientific community for its contribution to the exploratory type of research and to the understanding of factors that are not easily measurable, as well as for its synergistic action with other research strategies (Roy, 2009; Mucchielli, 2007). The approaches adopted during case study research have been engendered by various authors such as Stake (1995) and Yin (1994, 2003). Their studies have contributed to the recognition of the methodology by explaining the complexity of a phenomenon in its real context. For the purpose of our study, we have used Merriam’s (1998) inductive approach. All the Universities studied are situated in France. For the sake of confidentiality, their names are not disclosed. They are recognized by numbers 1, 2 and 3. The selection of these universities has been made in regard to their reputation, the number of students, and employees, the type of teaching and training (online for example), the IS/IT provided and finally the type of data (nominatives, even medical data). The actors using

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IT and IS and to whom these codes are being addressed, are quite heterogeneous. Among them are IS professionals, students, teachers, administrative professionals and other professionals (doctors, nurses…) with different competences and knowledge regarding IT uses. For some of them, the use of IS/IT is easy and almost instinctive and for others it is not. Each actor manipulates various types of data which can be sensitive, such as medical data. As it is the case with one of our universities who partners a medical center where the same IT/IS use of codes of conduct has been implemented. In this sector of activity colossal damages can be done if resources are not “properly” used. By implementing these codes, universities expect that all users will adhere to them. Three means have been applied to collect these policies: direct contact with IS department, intranet (contact student) and internet. This strategy helped to ensure that policies are current and accessible by the users for whom they are intended. During our investigation, we noticed that there are other types of codes targeting the employees of IS departments. In this chapter, we will focus our attention on analyzing the one addressed to students, teachers and professionals other than the IS department employees. Also, we have not been allowed to keep a copy of this document. Our study did not set out to prove or disprove hypotheses or to test theory; rather it sought to evaluate if "IT/IS use of code of conduct" can be acknowledged as a code of ethics using Johnson’s (1985) thematic analysis tool. After reviewing literature, the evaluation framework which seems to be more relevant to our research is the one proposed by Johnson (1985). It has been used twice by Oz (1992, 1993) in his studies. His main goal was to propose a unique code of ethics specific to IS professionals (ACM, DPMA, ICCP, CIPS and BCS). To achieve this purpose, Oz analyzed and compared the ethical codes of the four largest computer professional organizations in the US. This tool is particularly interesting because it allows to identify roles and responsibilities of each actor within and outside the organization. Johnson (1985) suggested that professional codes of ethics should be examined along four types of obligations: obligations to society, obligations to employer, obligations to clients and obligations to colleagues and to professional organizations. These four types of obligations have been applied in our study. (1)

Obligations to society

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The “misuse” of IS/IT or stored data may ultimately be a significant concern. That means that a professional should always consider the welfare of the public when performing his or her job. Information systems have a great impact on the public's security, privacy, and economic interests. Accepted ethical theories require that if a conflict of obligations arises, the net common good should be favored. This means that the good of the public at large should usually stand above the interests of other, smaller constituencies. (2)

Obligations to employer

An employee is paid and trusted by the employer to perform assigned tasks to the best of the employee's ability. Protecting the employer's interests is what people usually mean by "work ethics." If the employee is a professional, the employer's trust is greater because the employee performs activities that require expertise that the employer may not possess. Thus, the employer may not be able to scrutinize the professional. (3)

Obligations to clients

The business depends on clients for its survival. Failure of an employee to satisfy the employer's contractual and ethical obligations to the client hurts the employer. When the professional serves a client as a consultant, the client's relationship with the professional is similar to that of an employer, with all the ethical implications of such a relationship. (4)

Obligations to colleagues and to professional organizations

Members of the same trade share many interests. Thus, one is expected to help one's colleagues and respect their work. Professional organizations require their members to uphold the organizations' objectives and serve their interests for the common good of all members. Along with this evaluation framework, we have applied a thematic analysis strategy which helps us to identify, analyze, and report patterns (themes) within data. The first step corresponds to familiarizing ourselves with the codes content. We first identify the different actors involved, then we identify each actor’s obligations.

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4. Results Although advocated by the CNIL, we have found that there is no consensus on the designations assigned to the various codes as has been the case when reviewing the literature (see table 1). The lack of consensus may be due to the low quantity of studies carried out in the French context. Therefore an inexpert eye may think that these documents do not have the same purpose. See table 1 below the characteristics of the studies codes. Universities attributed number Number of pages

Designation

Date of the last update

Situation

Format

N°1

N°2

N°3

4

10

3

IS/IT use code of xxx university

Computer policy of the xxx university

02/2013

10/2007

Code of good uses/ practices of computer resources of xxx university

9/02/11

Internet & Intranet

Paper & Digital

Table 6-1: Universities “IS/IT use code” of conduct description overview When analyzing their content the code N°3 has attracted our attention as it contains a particular section which includes an agreement form to be

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signed (see bbelow). The presence p of thiis section has not been iden ntified in the other coddes.

Fig.6-1: Agreeement section within w universitty N°3 code.

Recurring tthemes

Scopee Accesss Law

Contentt Defines and identifies i the pprofile of userr, the ressources made available to th them and outliines the perimeterr S States access conditions; sta tates factors off user account a suspeension Statees law related to intellectuaal property, priivacy, freeddom of speech h…

Usage condditions

Deefines usage conditions c of rresources and outline what is i allowed andd forbidden

Availabble resourcces

ologies and seervices that aree made Tyypes of techno available to uusers

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Rights, duties and responsibilities of university

Defines and identifies what university is committed to do vis à vis to the law, to users and to employees

Rights, duties and responsibilities of IS employees

Defines what IS employees are called to respect such as privacy; what are their obligations

Rights, duties and responsibilities of other users

Specifies IT/IS usage rules (allowed and prohibited), rights, duties and responsibilities of user

Sanctions

Identifies type of measures that will be applied when a non-compliance is identified

Table 6-2: Recurring themes overview

Interestingly, theses codes consist of fragmented parts such as procedure of data storage or value promotion (privacy). During the analysis, each statement generally referred to a particular concept such as: confidentiality, privacy, freedom of speech, security, accessibility, integrity, respect and honesty. Integrity and justice for example, reflect basic principles of good, faith, sincerity and fairness, as proposed by Raiborn and Payne (1990). We categorized them as rights or as duties. They are either users’ responsibilities or users’ rights, university‘s duty or rights. For example the user has the right to demand that his/her information be deleted or changed and university has the duty to report any violation of the law perpetrated by users. Some duties and rights seem more obligatory than others, such as ensuring availability of resources by the university so the employees can do their job; the same thing with privacy rights. We also noticed that there are five types of actors who use IS/IT resources and who have been referenced explicitly or implicitly:

- IT department employees: their job is to plan interventions for

-

installation, configuration. At some point they have access to IS/IT resources. This means the IS/IT use of code of conduct applies to them too. Administrative employees Teachers

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- Students - University The profile of these actors suggested that they do not have access to the same data or technologies while interacting with university IS. Even though some rules have not clearly identified the target, we assume that implicitly they apply to each actor that uses university IS/IT regardless their profile. As our analysis advanced, some changes were integrated into the initial framework suggested by Johnson. We built tables that allowed us to show each actor’s obligations when using university IS/IT resources. Almost 80% of the identified obligations are on behalf of the university as tables 6-3, 6-4 and 6-5 show below.

IS department employees obligations

University Obligations

106

To employees

To society

To colleagues (all others employees)

To university

Ensure optimal availability of resources If a violation occurs, access rights may be immediately suspended until the administration’s final decision. Ensure the presence of data of an optimal quality in equal measures of both availability and security of university IT/IS resources, Can take necessary measures if the excessive use of resources by an user disturbs the overall IS functioning Commit to not circumventing restrictions on the use of a software, as well as to refraining themselves from copying a proprietary software, in accordance with law

To students

Communicate nominative data that concerns the user and rectify them according to the Data processing and Libertés law of January 6th 1978, modified on August 6th, 2004, if a user requires it. Is required by law to report any violation that has been identified.

Ensure optimal availability of resources

To students

University N°1 Code

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To society

Others universities

Obligations of other employees (teachers, administrative employees)

To colleagues

To university

Not to disclose their password and not to lend their account to a third party Commit to use computer resources exclusively for university activities Respect the IT/IS use code of conduct Commit to not leaving his work station without properly shutting down or locking his account.

To society

107

Abstain from carrying out, on a voluntary basis, operations that may affect the functioning of the network and integrity of computing and informational resources Abstain from making copies of commercial software, for any purpose, as well as duplicate,

Will report to IT Department any malfunction affecting computer resources availability, as well as any incident which undermines computer system security Abstain from circumventing restrictions on the use of a software, as well as to refrain from any copy of software , in accordance with the law

Make sure not to access data owned by another user

They are responsible for their own data backups keeping in mind the conditions for each category. Responsibilities include backup and integrity of their documents, as soon as they are not located on backup locations provided by Computing Services To make sure that removable media are not left unattended

To students

IS/IT Codes of Ethics and Usage

To university

To society

Will report to IT Department any malfunction affecting computer resources availability, as well as any incident that undermines computer system security Respect the IT/IS use code of conduct Commit to not leaving his work station without properly shutting down or locking his account. Commit to not disclosing his password and not to lend his account to a third party

Commit to not trying to use peer-to-peer software such as Kazaa, Skype, etc Commit to not making copies of commercial software, for any purpose, as well as duplicate, distribute or disseminate documents (images, sounds, videos, ... ) submitted to the intellectual property law Commit to not circumventing restrictions on the use of a software, as well as to refrain from any copy of software , in accordance with the law

Commit to not carrying out, on a voluntary basis, operations that may affect the functioning of the network and integrity of computing and informational resources Commit to not attempting to access private data belonging to another user

To others students

distribute or disseminate documents (images, sounds, videos, ... ) submitted to the intellectual property law Commit to not trying to use peer-to-peer software such as Kazaa, Skype, etc

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Table 6-3: Overview of University N°1 obligations specific to each actor

Students obligations

108

To society

Others universities

To students

To colleagues (all others employees)

To university

To society

Create awareness among users about the risks and limitations associated with Internet use through training or awareness campaigns Declare to CNIL retention times for traces and connection times, conditions of access rights available to users

Make professional mail addresses available.

To employees

109

Manage the e-mail addresses. Maintain the proper functioning of courier services Proceed to priori or posteriori control websites visited and access times that correspond IS department Limit downloading or copying of some large files or presenting a security risk for IS Ensure the status of sent messages (private, professional) employees obligations Declare to the CNIL retention times for traces and connection times, the conditions of access right available to users Filter access to certain sites Prohibit access to certain sites Respect intellectual property rights defined Avoid transmission: messages called sensitive; illicit characters content whatever the nature; content contrary to freedom of expression law; content infringing privacy (defamation,..)

University obligations

To students

University N°2 Code

IS/IT Codes of Ethics and Usage

Obligations of other employees (teachers, administrative employees)

110

To students

To colleagues Observe safety instructions, management rules of codes access Make sure not to leave their post in free access mode Keep all access codes confidential Observe the management of access. Do not directly connect other equipment to the local networks apart from those which have been entrusted or authorized by the institution To comply to measures that have been deployed to combat viruses and attacks by computer programs Commit to not voluntarily providing disruptions at the computer resources and networks functioning by either applying an abnormal manipulation of the hardware or software Be sure to protect available materials at his disposal against theft and vandalism Apply security recommendations of the institution Notify the employee responsible for security at the earliest opportunity of any observed malfunction or any anomaly discovered Point out to his senior manager or hierarchy of any possibility to access a resource that does not correspond to his privileges

To university

Chapter Six To society

Students obligations

111

To university

To society

Observe safety instructions, management rules of codes access Make sure not to leave their post in free access mode Keep his access codes confidential Observe the management of access. Do not directly connect other equipment to the local networks apart from those who have been entrusted or authorized by the institution To comply to measures that have been deployed to combat viruses and attacks by computer programs Commit to not voluntarily providing disruptions at the computer resources and networks functioning by either applying an abnormal manipulation of the hardware or software

Do not install, download or use on institution's hardware, software, or software packages whose rights of license have not been paid, or are not from reputable sites, or without authorization from the institution

Prohibit himself from accessing or attempting to access IS resources for which he had not received explicit empowerment. Do not seek to know access codes of others.

To others students

Do not install, download or use an institution's hardware, software, or software packages whose rights of license have not been paid, or are not from reputable sites, or without authorization from the institution

Prohibit himself from accessing or attempting to access IS resources for which he had not received explicit empowerment. Do not seek to know access codes of others.

IS/IT Codes of Ethics and Usage

Be sure to protect available materials at his disposal against theft and damage Apply security recommendations of the institution Notify the employee responsible for security at the earliest opportunity of any observed malfunction or any anomaly discovered

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Table 6-4: Overview of University N°2 obligations specific to each actor

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To employees

To society

Others universities

To students

To To university colleagues

To society

Communicate nominative data and rectify them according to the law « Informatique et Libertés » n° 78-17 of January 6th 1978, if a user requires it.

To students

113

It is forbidden to install computer equipment that interferes with university computer resources Commit to not vandalizing or destroying the working environment or the resources provided.

Commit to not interrupting or interfering with the normal operation of the network or of one of the systems connected to the network Abstaining from reproducing, representing, disseminating an artistic work (musical excerpts, literary extracts, photography, etc. ) in violation of property rights Will take necessary measures, in case of loss or theft, as a result of a request

IS department Communicate nominative data and rectify them according to the Informatique et Libertés law n° 78-17 of January 6th 1978, if a user requires it. employees Commit to not undermining the integrity or the sensitivity of a third party, through pictures or provocative texts obligations which are defamatory, discriminatory, hateful or abusive

University obligations

Code University N°3

IS/IT Codes of Ethics and Usage

Obligations of other employees (teachers, administrative employees)

114

To To university colleagues To society

These resources cannot be employed in projects not falling within University missions Commit to not damaging premises where computer hardware is stored It is forbidden to set up a computer equipment which could interfere in any way with university's computing resources

Abstain from hiding his identity or stealing the identity of another. Abstain from trying to damage the integrity of an employee by the communication of provocative, defamatory, discriminative or injurious media. Commit to not copying commercial software or to circumventing their protections, in contradiction with the principles of intellectual property code Commit to not infringing the privacy of a third party Commit to not encouraging the consumption of illicit substances Commit to not undermining the integrity or the sensitivity of a third party, through pictures or provocative texts, defamatory, discriminatory, hateful or abusive.

To students

Commit to not misusing shared computer resources Commit to not bypassing access control and restrictions of the network or any systems connected to the network Commit to not accessing third parties’ data without their permission, to remove or modify this data

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Students obligations

To university

To society

115

Abstain from hiding his identity or stealing the identity of another. Abstain from trying to damage the integrity of an employee by the communication of provocative, defamatory, discriminative or injurious media. Commit to not copying commercial software or to circumvent their protections, in contradiction with the principles of intellectual property code Commit to not encouraging the consumption of illicit substances Commit to not infringing the privacy of a third party

Abstain from stealing or using access means of other university users Commit to not misusing shared computing resources Commit to not accessing third parties’ data without their permission, to remove or modify this data

To others students

Commit to not misusing shared computing resources Commit to not use resources in projects not falling within University missions Abstain from stealing or using access means of other university user Commit to not access third parties data without their permission, to remove or modify these data

Commit to not interrupting or interfering with the functioning of a network or a system connected to the network Commit to not circumventing control access and restrictions put in place on the network or connected systems

IS/IT Codes of Ethics and Usage

Commit to not using resources in projects not falling within University missions Commit to not damaging premises where computer hardware is stored It is forbidden to set up a computer equipment which could interfere in any way with the university's computing resources Commit to not interrupting or interfering with the functioning of a network or a system connected to the network Commit to not circumventing control access and restrictions put in place on the network or connected systems

Commit to not undermining the integrity or the sensitivity of a third party, through pictures or provocative texts which are defamatory, discriminatory, hateful or abusive

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Table 6-5: Overview of University N°3 obligations specific to each actor

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IS/IT Codes of Ethics and Usage

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5. Conclusion We have noticed that these codes shared almost 90% of common statements. This is not a surprise as we know that the CNIL encourages organizations to adopt this practice. But we can also suggest that may be, there have been some “copy-paste” actions which led to similarities within the content. It can be advantageous during the formulation process but can be disadvantageous if the content is not customized as each organization has its own IS practices. Whilst culture plays a certain role in shaping codes of organizations, the overriding force and the paramount concern of universities within the three cultures appears to be: the self-preservation and protection of the organization. Our study has a number of limitations. It has been quite difficult to identify which of the statements are specific to IS department actors or other employees. Each actor has specific access rights and a different profile. It appears that the statements that specify obligations of IS/IT department employees are not easily identified, yet it has been clearly stated that these codes apply to all employees and all those who use IS/IT resources. Shouldn’t these documents include IT department employees’ obligations for the sake of transparency? The mere presence of a code therefore sends a message to all employees (Adam et al, 2001). We have to recognize that codes, whatever they are, cannot be regarded as a miraculous tool capable of solving all conflicting uses of IS/IT within organizations. However, it is in fact only the first step in the right direction; that is the journey toward a responsible company with regards to all its stakeholders (Ballet and Bry, 2001). The four codes reviewed by Oz for example, were formulated as an attempt to impose some system of guidance to the IT professional who has encountered an ethical dilemma. The codes do not specifically refer to obligations to society. It is our interpretation that all actors that interact with university’s IS/IT have obligations toward society but as we analyzed codes content, this dimension seems almost inexistent (see table 6-3, 6-4 and 6-5). Each obligation to society was always related to an obligation to the law. What happens when a user violates the university's code? Only two of the above universities mention sanctions against violating users. And when they exist, sanctions are somewhat vague against violations.

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We have also to notice that the tool developed by Johnson needed to evolve and to be adapted to the case study context. The analysis process was quite difficulty with regard to the difficulties we encountered when identifying each actor’s obligations. As in Oz (1992, 1993) studies, we noticed that some statements can give rise to a conflicting interest. This leads to the following question: whose interests should be the priority when an individual faces an ethical dilemma? In some professions, obligations to colleagues are sometimes raised above other obligations. For example in some countries it is virtually impossible to convince a fraternity member to testify against a fellow brother in malpractice cases. None of our codes tries to foster such "loyalties" among users. On the contrary, the codes encourage all actors of the university to expose “unethical” use of IS/IT of others actors. That implies that loyalty to the university is more important than loyalty to a colleague or to someone else within the organization. Clearly theses codes shared the same fundamental values (integrity, confidentiality, privacy…). The next step of our research will be to improve our evaluation framework by including universal values.

CHAPTER SEVEN E-BOOK ETHICS: DO NEW PRACTICES IMPLICATE NEW ETHICAL RULES? LAMINE SARR AND HAJER KEFI

1. Introduction Within six centuries of history, starting with the invention of printing by Gutenberg in the 15th century, the book industry is one of the oldest and most durable business lines. Like the cultural industries of music and cinema a few years ago, the book industry is facing its “digital revolution”. This phenomenon is intrinsically linked to the deployment of the digital technology or Information technology (IS/IT) in all parts of the book chain, from the production to the distribution as well as the ways of use and reading. However, the diffusion of the digital technology in the book industry has been growing much more slowly than the other cultural industries (Patino, 2008). Thereby, some actors have anticipated its deployment, relying in particular on the experience of music, media and film to take strategic positions in this sector. The electronic book (variously e-book, eBook or digital book) industry is nevertheless following a very specific development schema which seems to be totally different from what the other cultural industries have already experienced. The eBook industry is a challenging economic and social reality which infuses new market and also new social practices including novel exchanging, reading and learning processes within diverse communities. An important question arises concerning the eBook nature. How is it really perceived? As a “commodity”? As a “cultural product”? As a “means to access knowledge”? As a “technological device”? (Polizzi and Réach-Ngo, 2012). Or maybe as a combination of all these aspects. We argue here, that eBook is intrinsically a socio-material artefact in which the technological, the business/economic and the social components are

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interrelated and which is raising many new ethical issues, such as illegal downloading, hacking, improper circulation, misuse of personal data, etc. Many studies (Patino, 2008; Dacos and Mounier, 2010; Prost and Lekehal Maurin, 2013) have also announced that eBook will totally transform the publishing industry with the arrival of new actors guided by a strong business sense, and the emergence of new ways of producing, distributing, marketing and reading. The existence of some traditional book stakeholders could then be threatened, in the first place booksellers with the profusion of digital library platforms on the Internet, and marginally, publishers with the development of self-publishing. In the meantime, the printed book’s future with regard to the eBook’s seems to be subject to speculation and conjecture and raises an intense public debate about market trends, social practices and the role of the book chain stakeholders (Little, 2011; Quan-Haase and Martin, 2013). Presently, it seems premature to answer with certainty the question of whether the transition from printed books to eBooks will be complete, or if there will be a paradigm shift with eBooks that will lead to the end of the paper books or at least to the prevalence of eBooks on the paper books (Carreiro, 2010). Our aim here is not to make previsions but rather to provide the conceptual and empirical tools to apprehend these questions. More precisely, the purpose of this study is to investigate the current and emerging ethical issues arising from the deployment of IS/IT in the publishing industry, and also to put into light the practices and perceptions of eBook users concerning the changes brought by eBook in the book industry. We have undertaken a research process in which we have adopted a mixed (qualitative and quantitative) methodology including: (1) an exploratory phase of secondary data analysis using critical discourse analysis (Habermas, 1992; Cukier et al., 2009); and (2) a confirmatory phase of quantitative analysis with an online survey conducted among 206 actors of the book chain with an adaptation of the Reidenbach and Robin (1988, 1990) Multidimensional Ethics Scale (MES). We will first define our main concepts: what is an eBook and why is it so specific? On what streams of thought do we need to rely when studying eBook? And what do we mean by socio-materiality? Those are the main questions we will address in the following section, before presenting our

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methodology and results, and finally the future research and reflection avenues in which we believe our approach can most usefully be pursued.

2. Our Concepts 2.1 EBook: Definitions and specificities The eBook, in its first meaning is generally defined as the electronic version of the printed book (Reitz, 2004; Guy, 2007). But, one can now recognize that many e-books exist without any printed equivalent. EBook is also defined as “a published and distributed book in digital format, intended to be read on screen” (JORF 2012)1. Vassiliou and Rowley (2008) propose a bipartite definition of eBook that takes into account both the translation of the printed book in a digital environment, and also the integration of use features. « An e-book is a digital object with textual and/or other content, which arises as a result of integrating the familiar concept of a book with features that can be provided in an electronic environment. E-books, typically have in-use features such as search and cross reference functions, hypertext links, bookmarks, annotations, highlights, multimedia objects and interactive tools”. (Vassiliou and Rowley, 2008, p. 10).

The book historians agree on the existence of three revolutions that made the history of the book industry (Chartier, 1987, 1997; Mercier and al., 2002): x The invention of the book (manual book) in Antiquity with the clay or wood tablets, the papyrus, the codex in Mesopotamia, in the East Asia, and in ancient Egypt. x The invention of modern printing (printed book) in the fifteenth century attributed to Guntenberg, with the first printed book: The Latin grammar of Donatus in 1451. x The invention of the digital text (eBook), with the creation of the first version of eBook by Michael Hart in 1971: The United States Declaration of Independence.

1

Official Journal of the French Republic,n°0081 of April 4, 2012, p. 6130, Text n° 118

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Nowadays, eBook reading is increasing all over the world, especially within the developed countries. However, the growth of eBook is experiencing an evolution which is relatively different form country to country. Overall, the eBook market represents, 21% of the global book market in the USA, 25% in the UK, 10% in Germany, 5% in Spain and 3% in France (Global E-book Report, 2014). Generally, what we call the book chain refers to the interactions between the actors involved throughout the process of creation, production, distribution and marketing of the book from author to reader, including the agent of author, publisher, printer, distributor, bookseller, etc. (See figure 7-1). Many authors argue that the e-book chain is not significantly different from the book chain, because almost the same actors are at play, even though they may not have the same roles (Carreiro, 2010; Øiestad and Bugge, 2013). When we add an “e” to the word “publisher”, it becomes ‘”e-publisher”, the same for the author, etc. What we have to notice here is that the whole eBook process is not necessary digitalized, some physical processes are resisting the digital revolution, and may nevertheless lead in fine to the e-reading usage.

E-book Ethics: Do New Practices Implicate New Ethical Rules?

Fig. 7-1: Actors of the book chain

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2.2 EBook Ethics: from moral philosophy to IT Ethics A study on ethics cannot do without a discussion of the philosophical underpinnings of ethics theory. Ethics is generally defined as a discipline seeking to "enunciate universally valid proposals on the good and just action" (Hoffe, 1993, p.101). There is a multitude of ethical theories stemming from the moral philosophy, but we can distinguish four major streams of ethical theories: deontological ethics, consequentialist or utilitarian ethics, ethics of virtue and pragmatic ethics. Deontological and consequentialist ethical conceptions are grounded on the action while virtue ethics is focused on the agent (Chatterjee and Sarkar, 2010). As for pragmatic ethics, it is based both on the practical consequences of the action and on the actor who is performing this action (Kefi and Sarr, 2014). Deontological ethics are based on the respect of moral duties. An action is morally right if it is in accordance with moral rules, i.e. the act must obey to the moral norms regardless of its consequences. The main approaches of deontological ethics are: Kantian deontology with the categorical imperative and hypothetical imperative (Kant, 1789 orig./1971); the ethics of responsibility (Jonas, 1990) with the principle of "ecological" and "technological" responsibility toward future generations; the discourse ethics of Habermas (1992) with the principle of transparent communication to assess the validity of the standards and enlighten the choice of individuals; and the ethics of justice with the principles of equity and social justice (Rawls orig.1971 / 1987). Consequentialist ethics are grounded on the principle of utility and focus on the consequences of acts. The morally right action is the one whose consequences are good, in the sense that it contributes to maximize the happiness of the greatest number of people. The first consequentialist ethical approach is the hedonic utilitarianism with the felicific calculus2 and the hedonic postulate according to which the purpose of life is the pursuit of pleasure and the biggest happiness for all (Bentham, 1789; Mill orig.1863 / 1968). There is another trend of consequentialism: utilitarianism of preferences with the abandonment of hedonistic criterion for the objective criterion of "preference" Singer (1997). 2

Felicific calculus is a rational measure of happiness formulated by Bentham for calculating the degree of pleasure caused by an act, referring to seven indices: duration, intensity, certainty, propinquity, fecundity, extent and purity.

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Virtue ethics (Aristotle trad.1989, Hursthouse, 1991; MacIntyre, 1997) focuses on the character traits of the person who acts and not on the action itself. It is a question of developing the agent’s personal attitudes, which predispose him to act well. That is why Aristotle asserted, "be virtuous and your actions will be right" (Aristotle trad.1989, p.29). Pragmatic ethics is originated from Pierce’s pragmatic philosophy (orig.1978 / 2002): the "Pragmaticism". It is a method of conceptual clarification both scientific and realistic. Rather than simply saying what is "ethical" or "unethical", "moral" or "immoral", "fair" or "unfair" it relies on the interpretation of each concept in terms of its practical consequences. These practical consequences express rules of conducts to recommend to the individual (James, 2007). The pragmatic ethics appears as an experimental science inspired by the real (Dewey orig.1948 / 2003) in the sense that it does not consist in the prescription of general rules, but in the implementation of tools and the development of capacities which will allow the agent to resolve ethical dilemmas. In its pragmatic conception, ethical theory is necessarily pluralist or relativist. Within the framework of this research, we propose a definition of ethics as a set of rules, values and principles of personal behaviours that guide the individual towards actions qualified as “good”, “just” or “fair”, as regards to the consequences of the act, to the affected people and to the general rules of conduct in force in a given context. As reminded by Mingers & Walsham (2010), moral ethics have built the bases for many applied domains like business ethics and also Information Technology ethics. Many practitioners and academicians have stated to focus on ethical issues following the financial scandals of the early 2000. The Sarbanes-Oxley ACT (SOX) of 2002 in the United States is a good illustration of this interest. It has aimed at improving corporate governance and enhancing rules within accountability and financial control practices. It has also profoundly affected the work of IT professionals. A wide range of ethical considerations comprising, to cite a few, identity abuse, property theft, loss of privacy, and hacking have emerged. Many of them directly impact the eBook industry (the professionals/business side) and usage (the users/societal side). We therefore argue that to understand eBook ethics, one has to take into consideration two components: business (and more precisely e-commerce and m-commerce) ethics and also IT ethics.

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It seems evident that the eBook industry relies heavily on the Internet, via e-commerce and m-commerce based business models. The development of mobile devices and wireless networks allow users to purchase their books using their eReaders, smartphones or tablets (Ratten, 2010). As a discipline, E-commerce ethics is considered as a branch of moral ethics applied to the issues arising from the exercise of commercial activities online (Kracher and Corritore, 2004). Kracher and Corritore (2004) developed an analysis of the foundations of the e-commerce ethics around the question: “is there a specific ethics in the e-commerce?” They concluded that the ethical issues as well as the current principles and moral rules in the traditional business are basically the same as those of the e-commerce. “The ethical rules in e-commerce are not fundamentally different from those in brick and mortar business.” Kracher and Corritore (2004, p.90).

Moreover, ethical considerations play a very important role in the econsumer’s intentions to buy in e-commerce sites. Thus, ethical considerations such as the protection of personal data, trust or security would affect the intention and the e-consumer willingness to buy goods online (Avshalom et al., 2007). In the same perspective, other studies conducted by Taiwanese researchers show that ethics plays a more central role in the continuance of business relations between the online shopper and e-vendor; “Ethics profoundly impacts the formation and maintenance of long-term buyer-seller relationships” (Cheng et al., 2011, p. 87)

Concerning the IT ethics (we can also say “computer ethics” or “information ethics”), it is generally recognized that Norbert Winer (1950, 1964) is the pioneer of this field, even though his work developed alongside his seminal theory of cybernetics, has been totally ignored for decades. He advocates that the four “Great Principles of Justice” such as Freedom, Equality, Benevolence and the principle of Minimal Infringement of Freedom must be used as an analytical framework for issues relating to IT Ethics. The same is true for the couples of Fundamental human values: “life and health, work and wealth, knowledge and ability, creativity and happiness, democracy and freedom, peace and security” which could be affected positively or negatively by the use of IT (Bynum, 2005).

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In the 1970s and 1980s, IT ethics was recreated due to works of Maner (1980), Moor (1985), Mason (1986) then defined four ethical concerns; privacy, integrity, intellectual property and accessibility. In the 1990s, more attention was paid to professional ethics in order to settle standards of good practice and codes of conduct for IT professionals (Gotterbarn, 1991). These approaches are profoundly anchored on moral philosophy, IT professional ethics is for example deontological, while Wiener advocated a Rawlsian ethics of justice. More recently, Mingers and Walsham (2010) have discussed the contribution of Discourse ethics (Habermas, 1984, 1987) to build a relevant approach of IT ethics for academicians and practitioners alike.

2.3 Socio-materiality and EBook Ethics The socio-material is a new approach in the study of information technologies (Orlikowski, 2006, 2007 and 2009; Orlikowski and Scott, 2008, 2009; Leonardi and Barley, 2008, 2010; Leonardi, 2011). It relies on the idea of an interaction between the social and the material aspect of technology. This interaction is the basis of the construction processes of the IT uses and practices. "The social and the material are considered to be inextricably related There is no social that is not material, and no material that is not social." (Orlikowski, 2007)

The socio-material approach goes beyond the socio-technical approach (Bostrom & Heinin, 1977) and the classical opposition between three streams of the technological determinism, the social determinism and the theory of the co-construction. Traditionally, the tenets of the technological determinism (Ellul, 1962; Helbroner, 1967; Heidegger, 1977) consider that the technological evolution is a factor independent from society, and that it is the technology which shapes the individual behaviour and the social changes. On the other hand, the protagonists of the social determinism (Bijker, 1995) defend the thesis of the social creation of the technology. Here, the economic and social factors shape the technological developments and therefore produce societal impacts.

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The co-construction thesis supports a median position. The technical and the social are both socio-material artefacts. Social things are separate from technology and vice versa. “Technology and society mutually shape one another and are seamlessly intertwined” (Johnson, 2006, p.459). Our choice of the socio-material approach is then totally justified because of the interpenetration between the technical and social aspects of technology concerning the eBook. Consequently, the ethical issues related to eBook, which we will define as eBook ethics will be apprehended through Moor’s Law according to which the social impact of technology and the ethical issues increase as technology progresses toward the power stage. The works of Moor (1985) on IT ethics distinguish three stages of technological evolution: introduction, permeation and power. « Moor’s Law: As technological revolutions increase their social impact, ethical problems increase. » (Moor, 2005 p. 117) As regards to the Moor’s Law (2005), eBook is nowadays more likely situated at the permeation stage of its evolution process (see figure 2). The first stage, introduction, began with the creation of the first version of eBook by Michael Hart in July 1971, when he was a student at the University of Illinois with his Gutenberg project. His objectives were to: “encourage the creation and distribution of eBooks, help break down the bars of ignorance and illiteracy” and to “give as many eBooks to as many people as possible” (Hart 1992).

In the early 2000s, the first attempts to release eReaders (Cybook, Softbook, Rocketbook and Sony) were relatively unsuccessful because of their price (they were perceived as expensive) and poor content (very few available titles). The ethical issues were at this stage almost inexistent. The permeation stage has more likely begun in 2007 with the commercial success of eReaders, devices specifically dedicated to eBook reading: Kindle in 2007; Sony Reader and PocketBook in 2008; Nook in 2009; Kobo in 2011 and Cybook. In parallel, this phase coincides with the development of digital library platforms: Amazon, Apple iBookstore, Barnes & Noble, Bookeen, ePagine, Immateriel, Librairie Numérique Africaine, Numilog, etc., and with the attempts of standardization around the ePub format within the IDPF (International Digital Publishing Forum). On the other hand, it is important to underline the proliferation of illegal downloading platforms and peer-to-peer networks of eBook sharing.

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Fig.7-2: EB Book Evolutioon Process

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There are strong reasons to believe that the last stage of development, power has still not taken place. It will be very intriguing and interesting to identify the ethical issues associated with this phase.

3. Methodology and findings Our research process is depicted in figure 3. We first of all started with a literature review and in parallel conducted a documentary analysis of diverse data sources. This led us to the exploratory phase of our study in which we analysed a huge data corpus using the Critical Discourse Analysis method (Habermas, 1992; Cukier and al., 2009). Our findings at this stage led us to formulate our research hypotheses, which were then tested in the second phase (the confirmatory phase) using an online survey conducted within 206 actors of the book industry. In the following subsections, we will present for each phase how we proceeded and our main results.

3.1 Exploratory phase: CDA protocol and Results The ethical issues related to eBook in the publishing industry feed an intense debate stemming from various academic and professional sources, which we propose to analyse in a structured way. We have collected a corpus of 108 elements that directly address the impact of eBook in the publishing industry. It includes research articles (in multiple disciplines), press articles, official reports, websites and blogs (see Table 7-1 below). Source Type Research articles Press Articles Websites and blogs Official Reports Total

Number 55 28 18 07 108

Table 7-1: Corpus analysis of secondary data

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Fig. 7-3: Methodological Research Approach

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We applied the method of Critical Discourse Analysis (CDA) which stems from Habermas’ Discourse ethics. This theory postulates that neither the truth nor the cogito are accessible. For Habermas, the primary function of communication is the construction of understanding and the agreement between people. Following communication through rational discussion is likely to help individuals make their choices. The discourse ethics outlines at the same time the rules for effective and free communication; i.e. transparent communication that favours mutual understanding to reach an agreement. This communicative process is organized around the values of transparency, fairness, sincerity, truth and relevance (Habermas, 1992). Accordingly, the CDA method relies on a text analysis using four indicators considered as the validity claims of the discourse: (1) Comprehensibility: is the communication sufficiently intelligible? (2) Truth: Are the arguments and evidences verified by an appropriate reasoning? (3) Sincerity: honesty of the person making the arguments (balance between what he/she says and how he/she says it; (4) Legitimacy: of the person who expresses, with regard to his skill and to his degree of implication in the phenomenon (stakeholder). Specifically, we conducted CDA analysis using the four steps method developed by Cukier and al. (2009): x the determination of the data corpus to be analysed; x the coding and content analysis phase (according to 4 CDA indicators: comprehensibility, truth, sincerity and legitimacy); x the reading and the interpretation of the results; x the explanation of findings. Because of the density of our corpus, we have used a qualitative data analysis software which is QSR NVIVO 10. The main results of this exploratory phase allowed us to identify the following eBook ethical issues: property; illegal downloading; piracy; access; price; tax nomadism of the operators; protection of personal data; dominant positions in the book market; lack of interoperability between reading supports and file formats; self-publishing; mutations of the book:

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redefinition of the book, interactivity and hypertextuality; future of the book industry: the disappearance of traditional actors? Future of the printed book versus eBook: is there any paradigm shift? The relevance of each of these issues is perceived differently depending on the category of actor involved (See table 7-2). Readers

Authors

Property

Illegal downloading Piracy

Personal data Price

Price (income distribution)

Access

Nature and book mutations

Lack of interoperability Nature and book mutations in the Future of paper book

Future of paper book Selfpublishing

Traditional players (publishers, booksellers) Hacking Tax nomadism major operators Price (aggressive downward practices) Dominant positions (in the book supply chain) Future of traditional players Future of paper book

New Digital players

Piracy Illegal downloading Lack of interoperability Closed systems of marketing and distribution Proprietary file formats Nature and book mutations in the

Self-publishing

Table 7-2: Main ethical issues identified The property refers to the right to own, to use and to dispose of a thing absolutely and exclusively subject to legal restrictions3. It gives its holder "usus", "fructus" and "abusus", i.e. the right to use the good, to make it yield a profit and to make it whatever pleased. According to many readers, the ownership of eBook is not effective, it is incomplete, unlike a paper book, which may be offered, lent, borrowed, exchanged or sold by its owner, subject to the respect of copyrights. 3

Article 544 of the French Civil Code, Law No. 1804-01-27, February 6, 1804.

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EBook circulation is materially limited by technical constraints and by some trade practices. Technical constraints come from the lack of interoperability of file formats and/or reading supports, and the existence of DRM4 and other technical protection measures. Trade practices are those that have the effect of restricting eBook circulation. It is the case of the adoption of closed systems of marketing and distribution, and the use of proprietary file formats. The case of Georges Orwell's books in 2009 is an example that illustrates perfectly the problem relating to the ownership of eBook. Effectively, Amazon erased, without informing their owners, Orwell's books Animal Farm and 1984 which were held in their Kindle eReaders. Illegal downloading means the act of procuring, accessing or sharing illicitly a digital content protected by copyright. Piracy and illegal downloading are issues of particular concern to authors, publishers and managers of digital library platforms, because a pirated book can be unlimitedly shared and copied on the Internet or by physical supports (data storage devices). The multiplication of reading devices (computers, eReaders, tablets and smartphones) has contributed to the spread of this phenomenon. Figures relating to piracy and to the existence of illegal downloading platforms are worrisome. In France, more than 50 % of eBooks are pirated. Besides, 34 % of the readers declare using illegal means to get eBooks (HADOPI Report 2014). In the United Kingdom, illegal downloading represents between 35 and 65 % of eBooks while in Russia more than 90 % of the eBook available supply results from illegal downloading websites (Global E-Books Report 2014). Access refers to the ability of accessing eBooks easily with the appropriate file format for the reading devices during the acquisition, reading or circulation of eBooks. Issues related to access are due to a certain extent to the trade practices which consist in locking files and reading devices, to the lack of standardization of file formats and protocols, and to the unavailability of certain titles in legal digital bookstores. 4

DRM (Digital Rights Management) are technical protection measures that are designed to manage the use of digital contents in order to control, prevent or restrict the access and avoid copyright infringements.

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Concerning the protection of personal data, it is about information such as ID, name, address, bank details, etc. that users provide when purchasing or using eBooks. The problem lies mainly in the security of confidential data and in the fact that this data may be reused for other purposes: targeted advertising, spamming, unwanted advertising, etc. Issues related to the eBook prices are threefold. Firstly, for users an eBook is generally 20% cheaper than printed books; some readers consider this price too high (Tosun, 2014). The reasons result to a certain extent from the perception of eBooks as a medium of information and especially from the principle of free information, one of the founding principles of the Web (Beaude, 2014). Secondly, booksellers and publishers denounce "aggressive downward" pricing policies practiced by major online bookstores (Amazon, Apple, etc.). The traditional book players that cannot align to these prices eventually go bankrupt. According to the traditional players of the book industry, these practices place the major operators in a situation of quasi-monopolistic dominance likely to create barriers to the market entry and distort competition. The third price’s issue is relating to the distribution of income among authors, publishers and other intermediaries of the book industry. Some authors consider this distribution of income unfair and grasp the opportunities offered by digital editing to renegotiate contracts or engage in self-publishing. The self-publishing allows authors to publish and distribute their own books without the intermediary of a publishing house. It is generally practised via the online platforms of self-publishing that translate the book into digital format and also provide a distribution and printing on demand service. Currently, it is an issue which has generated a lot of debate. Some consider that self-publishing is a risk to the quality of published books by arguing that the "good books" are drowned in the profusion of “useless publications”. Others see through self-publishing a certain democratization of writing and publishing, and also a chance for the discovery of new talents and enriching catalogues. The future of some traditional actors such as booksellers and publishers, who until now have been one of the key links in the book chain could be threatened with the growth of online bookstores and selfpublishing. The bankruptcy in 2011 of Borders, one of the biggest

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bookstores’ chain, the judicial liquidation of Chapitres bookstores in France in December 2013, and the increasingly frequent closing of small neighbourhood bookstores are illustrative examples. The interrogations about the future of paper books seem very acute with the speculations about the likely end of printed books5. But most observers argue the thesis of coexistence between the two reading media even if it seems not impossible to achieve a paradigm shift in the publishing industry with the preponderance of eBook on the printed book. The issue relating to the nature of the book arises with books’ mutations. Firstly, the positioning of the book-object as a “cultural product”, “commodity”, “means of access to knowledge”, “service”, “consumer good” (Polizzi and Réach-Ngo, 2012) or “technological device”. Secondly, even if the book as a work of the mind remains intact regardless of the medium that conveys it (paper or digital), the content itself is undergoing significant changes with the interactivity, the hypertextuality6 and the integration of video or audio contents (audio books).

3.2 Confirmatory Phase: Online Survey design and Results Building on our findings of phase 1, we developed a questionnaire which we administered online among diverse actors of the book industry (authors, publishers, booksellers, librarians etc.). Our questionnaire is structured around three parts: (1) Types of usage, reading and acquisition practices; (2) ethical issues arising from the qualitative exploratory phase (3) and respondents’ information. The second part of the questionnaire was treated with particular care. Every ethical issue was evaluated using an adaptation of the Multidimensional Ethics Scale of Reidenbach and Robin (1988, 1990). The MES emphasized four dimensions: Justice, Relativism, Utilitarianism and Deontology. Each dimension is measured using two criteria (see Table 7-3). 5

On the search engines, there are over 196 million results for the query "end of printed book" in the January 5, 2015. 6 Hypertextuality refers to the existence of numerous hyperlinks that allow reaching directly references or information within the eBook, on a web page or in other eBooks.

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Justice Measures Unfair

Fair

Unjust

Just

Relativistic measures Unacceptable (For me)

Acceptable (For me)

Unacceptable (In my culture) Utilitarian measures

Acceptable (In my culture)

Unprofitable (In terms of balance cost / advantage for me) Unprofitable (In terms of balance cost / advantage for the actors involved) Deontological measures

Profitable (In terms of balance cost / advantage for me) Profitable (In terms of balance cost / advantage for the actors involved)

In conformity (With standards and practices in force) In conformity (With rules of conduct in force)

In conformity (With standards and practices in force) In conformity (With rules of conduct in force)

Table 7-3: Multidimensional measurement scale The survey sample includes 206 individuals whose characteristics are below (See table 7-4).

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Criteria

% Gender

Men Women Type of actors in the book chain Readers Authors (and authors’ agents) Traditional players (publishers, distributors, booksellers etc.) Digital players (E-booksellers, digital contents suppliers, reading support manufacturers, etc.) Level of education High school diploma (or less…) Undergraduate College degree Master’s college degree (M.Sc, M.A…) Doctoral degree (Ph.D) Age Under 25 26-35 36-45 46-55 56-65 More than 65

49.5 50.5 72.3 11.7 12.6 3.4

1.5 31.6 44.7 22.3 37.4 30.1 17.0 7.3 5.8 2.4

Table 7-4: Sample Characteristics The results of this second phase of our research highlight the main eBook’s practices related to usage, acquisition, reading and circulation. They also show users’ perceptions of eBook’s nature and the evolution of the book industry. Reading practices paper / digital It appears from this study that more than half of the surveyed people, about 55%, read exclusively paper books while only 4% reading exclusively eBooks. 41% of the respondents use both reading supports (See figure 7-4). The findings also show that eBook users are particularly attached to printed books. Over 65% of eBook readers say they are attached to the

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paper book, 44% expresss a very high degree d of attaachment. Thatt explains the lower ratte of users reaading solely eB Books. Furtherm more, the finddings show no correlation between the eBook’s adoption annd the decreasse of paper books b readingg: 72% of resspondents declare that adopting eBoook does not lead them to read less paper books. Thus it mayy be inferred that eBook is not going to replace co ompletely paper bookks. Accordingg to the reaaders, eBookks and printeed books constitute tw wo different but complem mentary ways to enjoy reaading: the usefulness aand portabilityy of eBooks on n the one handd, and the pleaasure and the emotionnal attachmentt to printed bo ooks on the oother. These reesults are consistent w with a rapid grrowth of eBoo ok reading, be side the coexiistence of both readingg supports.

Fig. 7-4: Reeading practices paper boo oks versus eB Books Acquisition,, circulation and a distributio on of eBooks The majjority of eBoook users (about 61%) gennerally read very few eBooks in thhe year, only 22% of them m say they readd at least onee eBook a month, 13% % read betweeen two and fiv ve eBooks peer month and only 4% read more thhan five per month. m In the m meantime, the results show that the reasoons underlyin ng the use of eBooks aare by order of importancee: the mobilitty and portab bility of a

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personal librrary, the storaage capacity, the t rapid and eeasy access to o books at any time (244/24), the easse of sharing, and the low price comparred to the paper book. However, thee environmenttal awareness is very margiinal in the motivations for eBooks use. u These ressults seem to ccontradict som me recent studies accoording to whicch environmeental consciouusness would influence the adoptionn of digital books and redu uce the prefeerence for pap per books (Bansal, 20111). Regardinng the brakees of eBookss use, users depict the following f obstacles: reeading on a sccreen; the neeed to give theeir personal daata in the purchase off eBooks; the lack of the leegal supply oof regular eBo ooks; and the long and complex acccess process to eBooks ((identification, account creation…).

f Fig.7-5: eBoook reading frequency Concernning the acquiisition of eBo ooks, the resuults show a relatively important paart of illegal means m of proccurement. Eveen if 65% of users say they have nnever illegallyy downloaded d eBooks, thhe questions about a the platforms annd modes of acquisition a sho ow that only 552% of users use u solely legal means to obtain eBoooks. About 36% of users declare havin ng illegally ddownloaded eBooks e at least once, while 10% use u illegal meeans regularlyy (i.e. at leasst once a month) to oobtain their diigital eBooks. For users, thhe reasons th hat justify

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illegal downnloading are respectively: r the price, thee desire to enrich their own digital library, the innsufficiency of o the legal suupply of regullar eBook and the deficciency of the protection p sysstems.

Fig.7-6: Acq quisition meaans of eBookss

ding practicees Fig.7-7: Illeegal download

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Regardinng eBook cirrculation betw ween users, 669% declare they had never lent, eexchanged orr borrowed eB Books. But byy questioning in depth the effectivee practices of sharing, we realized that am mong users, more m than half, about 553%, have alrready shared digital books mainly by means m of a copy on phyysical media of o data storag ge devices (US SB key, CD, DVD…), by email or via a websitee storage and sharing of coontent (Dropbo ox, Drive etc.). ality Perception oof the eBook socio-materia In the uusers’ perceptiion, eBook iss a multidimeensional objecct, which covers severral aspects: diidactic, cultural, technologiical and econo omic. For users, eBookk is primarilyy a means of access to knoowledge and a cultural product befoore being a tecchnological prroduct, and m marginally a seervice and a commodityy.

Fig. 7-8: Peerception of th he nature of eBooks Prospective perceived chaanges in the publishing p inddustry The percception of thhe book indusstry physiognnomy in the long-term l according too the users goees in the direcction of coexisstence between the two reading meddia, paper annd digital. Bu ut there will bbe a predomiinance of eBooks on printed bookks due to a ceertain extent to the advan ntages the digital suppoort has in term ms of mobility y, portability aand accessibiliity.

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Fig. 7-9: Peerception of th he book indu ustry physiogn nomy

4. Concllusion This reseearch aimed too make a conttribution to thhe understandiing of the socio-materiial changes brought b by th he digital tecchnology in the book industry in tterms of practiices and ethical issues. Our exploratory phase allowed us to put into liight the moree relevant eBook ethiccal issues, as they t are effecttively perceivved and experiienced by diverse actoors and stakehholders. Thosee issues are m mainly about property; illegal dow wnloading; pirracy; access; price; tax nnomadism off the big operators; m misuse of persoonal data; dom minant positioons in the book k market; lack of inteeroperability between b readiing supports aand file form mats; selfpublishing; mutations of the book and d the risk of ddisappearancee of some traditional aactors. The connfirmatory phaase has show wn the practicces and perceeptions of eBook userss. Four major findings have particularly eemerged. First, thee perception of eBook as a multidimeensional socio o-material object, whiich covers several s interrrelated aspeccts: didactic, cultural, technologicaal and econom mic. eBook is considered prrimarily as a means of accessing knnowledge andd a cultural prroduct beforee being a tech hnological device, and marginally ass a service or a commodity.

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Second, concerning eBooks’ acquisition, illegal means of purchase and procurement seem to be predominant. This confirms many previous studies (Carreiro, 2010; Lin and al. 2013; Global eBook Report 2014; HADOPI 2014) Third, there is no correlation between the eBook’s adoption and the decrease of reading of paper books. Fourth, according to users, the book industry physiognomy in the longterm will be characterized by the coexistence between the two reading supports (paper and digital), but with a predominance of eBook on printed book. The study we are reporting here is part of an ongoing research project. The upcoming step consists of a series of semi-structured interviews conducted within a sample of 25 professionals of the book/eBook industries. It is intended to deepen our understanding of the concepts and empirical findings we have already defined and constructed. We will be particularly interested in analysing and understanding the rationales that lie behind the strategies and actions adopted by the diverse actors in order to confirm or to transgress the existing ethical and normative barriers and thereby help shape or eliminate new ones through time. The limitations of this research may derive from the complex nature of the ethical process. We implicitly posit that ethical behaviour is preceded by ethical intention, which is shaped by moral judgement (Rest, 1986; Trevino, 1986; Jones, 1991). The causal relationship between these components has however never be demonstrated to our knowledge. In addition, it may seem simplistic to analyse the individual ethical behaviour in terms of a few well defined moral idiosyncrasies. Our research presents many distinctive contributions, both at theoretical and empirical levels. Our findings are inferred due to a rigorous research process including a mixed methodology and applying well established research techniques. We have identified the major eBook ethical issues and ranked then according to their relevance for the diverse actors in play in this industry. We have also put into light the practices experienced through eBook usage and to what extent they are willing to enhance or change the economic, social and ethical structures. Even though the book as a content stemming from a work of the spirit remains intact whatever the medium which conveys it (paper or digital), it

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seems that eBook is changing profoundly the reading process and thereby the learning and knowledge transfer processes in a way, which we hope, will be fruitful for all of human kind.

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CONTRIBUTORS

Anil Aggarwal is a Professor in the Merrick School of Business at the University of Baltimore. Dr Aggarwal was a Fulbright scholar and held Lockheed Martin Research and BGE Chair at the University of Baltimore. He has published in many journals, including Computers and Operations Research, Decision Sciences, Information and Management, Production and Operation Management, e-Service, Decision Sciences - Journal of Innovative Education, Journal of Information Technology Education: Innovations in Practice, Total Quality Management & Business Excellence, eService, International Journal of Web-Based Learning and Teaching Technologies and Journal of EUC and many national and international professional proceedings. He has published three edited books on web-based education and cloud computing, and is currently editing a book on big data. His current research interests include webbased education, business ethics, big data, virtual team collaboration and cloud computing. Alain Bensoussan is an attorney-at-law in Paris (France) specialized in IT/IP law. He founded in 1978 a law firm focused on technology law and data protection law. Mr Bensoussan has pioneered numerous concepts such as the right to be forgotten, the rights of the digital person and the law of robots. He is the president of Lexing®, a global network of lawyers specialized in technology law, and of Association du droit des robots, an association promoting the development of the law of robots. He is also a WIPO domain name panelist. Mr Bensoussan is the author of many books including the first treatise on IT and telematics law (Droit de l’informatique et de la télématique, Théorie et Pratique, Ed. BergerLevrault, 1985) and a comprehensive guide to data protection law (Informatique et libertés, Ed. Francis Lefebvre, 2è éd. 2010). Nabil Bikourane is Assistant Professor in Management Science in the University of Paris Descartes. His research activity is focused on Corporate Governance in the Healthcare, Banking and Nonprofit sectors. Dr Bikourane obtained his Ph.D in the University Montesquieu of Bordeaux (France).

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Contributors

Serge Bolidum is a Ph.D Candidate in Paris-Dauphine University. His research focuses on the use of new information technologies. He is teaching information systems and management strategy in universities and business schools in France. With more than 20 years of professional experience in international management positions, he is the CEO at an IT solutions consultancy. Marc Favier is Full Professor of Information Systems at the University of Grenoble (France). He is a graduate of Computer Science. He has published 38 articles in scientific journals and 12 books or of books’ chapters. He is supervising many PhD students and is or was the director of various graduate or PhD programmes in IS or MBA. His current research and teaching interests include information management, strategy and IS, E-business, Decision Support Systems, collaborative technologies and virtual teams. Gilbertine Ikili Ossana is a Ph.D Candidate at the University of Grenoble (France). Her research interests include IT ethics, human-computer interaction and human values, media ethics and artificial intelligence. Trevor T. Moores is a Professor of Computer Information Systems in the Department of Statistics and Computer Information Systems at Baruch College, City University of New York (USA). He has a BA (Hons) majoring in Philosophy and Psychology, and a MSc in Computer Science. Trevor gained his PhD in 1993 from the University of Aston (UK). His research interests include IS/IT ethics, ethical decision-making, issues of online trust, and the adoption of health IT. Pierre-Michel Simonin is teaching Information and Communication, Geopolitics and Epistemology in the University of Paris Descartes. He obtained his Ph.D degree in Philosophy in the University of Paris La Sorbonne in 1980. His recent works and publications are focused on philosophy of communication and IS/IT societal impacts. Lamine Sarr is a Ph.D candidate and an assistant professor in Management Science in the University of Paris Descartes Sorbonne Paris Cité. He is the chief editor of NENA (Nouvelles Editions Numériques Africaines) and Co-founder of LNA (Librairie Numérique Africaine). His research interests are mainly focused on IS/IT Ethics and Digital Publishing.

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Isabelle Walsh received her PhD and HDR (Habilitation to supervise research) in Management from Paris-Dauphine University in France. She also has extensive corporate and consulting experience. She is full professor at Neoma Business School, France. Her research deals with sociocultural aspects and methodological issues within the Information Systems and Management research fields. Her research works have been published in various research outlets including Organizational Research Methods, European Journal of Information Systems, Grounded Theory Review, Journal of Strategic Information Systems; Management & Avenir and Systèmes d’Information et Management.

SUBJECT INDEX Accessibility 2; 55; 82; 98; 99; 104; 127; 142 Anonymity 21; 22; 23; 47 Beneficence 53; 54; 55; 57; 58; 68 Business Ethics 4; 95; 96; 125 Cascading Liability 5; 17; 18 Case Study 6; 99; 118 Code of Conduct 95; 99; 100; 105; 107; 108 Code of Ethics 6; 20; 95-97; 98; 100 Computer Ethics 2; 95; 126 Confidentiality 15; 52-55; 60-63; 66; 67; 69; 72; 95-99; 104; 118 Consequentialist Ethics 124 Critical Discourse Analysis 120; 130; 132 Deontologism 96 Deontological Ethics 4; 124 Digital Ethics 2; 85; 86 Digital Publishing 6; 128 Digital Revolution 119; 122 Digital-Life-Enhanced Basic Social Process 87; 88 Disability 72-88; 90; 91 Diversity 21; 25; 27-29; 80 Doctor-Patient Relationship 6; 5659; 62; 68; 70 Ebook 119-145 e-learning 21-25; 29 e-health 50; 52 Electronic Health Record 6; 50-70 Ethical Context 74 Ethical Theories 96; 101; 124 Grounded Theory 6; 73; 88; 91 Healthcare system 5; 55-59; 66; 70 Impairments 6; 71-73; 78; 79; 83; 85; 87; 88; 90; 91 Inclusion-Based Perspective 80; 81 Information Ethics 2; 3; 85; 86; 126 Infosphere 3 Insecurity 66; 71

Integration-Based Perspective 80; 81 Integrity 2; 5; 23; 33-36; 38; 40; 41; 98; 99; 104; 107-116; 118; 127 Intellectual Property 2; 18; 86; 99; 103; 108-116; 127 Intimacy 5; 30-48 Justice 2; 35; 57; 59; 64; 69; 104; 124; 126; 127; 136; 137 Liability 5; 11-18 Macro-Ethics 57 Medical Behavior 61; 62 Medical Ethics 51; 52; 56; 59; 63; 70 Medical Information 51; 52; 56; 59 Medical Secrecy 54 Memoing 73 Mental Regression 46; 47 Methodology 6; 7; 72; 73; 96; 99; 120; 130; 144 Misuse 2; 15; 94; 95; 101; 120; 143 Modernity 35; 36; 39 Moor’s Law 128 Moral Philosophy 4; 86; 124; 127 Multidimensional Ethics Scale 120 ; 136 NetEthics 20-29 Patient Autonomy 52; 62; 63; 69 Philosophy of Information 3 Pragmatic Ethics 4; 124; 125 Privacy 2; 5; 6; 14; 15; 23; 30; 34; 36; 38; 41; 44-48; 50; 52-54; 62; 63; 67; 69; 71; 86; 98; 100; 101; 103; 104; 109; 114; 118; 125; 127 Professional Ethics 2; 96; 127 Property Law 11; 18; 108 Quantitative Analysis 120 Qualtitative Analysis 132 Questionnaire 25; 91; 136 Relativism 136

Information Technology Ethics Robot Personhood 5;13-14 Self-Publishing 120; 132; 133; 135; 143 Self-respect 26; 28; 29 Social determinism 127 Social Network 1; 6; 22; 31; 32; 41; 47; 50; 71 Socio-material 6; 119; 120; 127; 128; 142; 143 Solidarity 37; 48; 57; 58; 64; 65; 69 Stakeholder 5-7; 18; 20; 21; 23-25; 29; 83; 117; 120; 132; 143 Stigma 74; 75; 82; 91 Technological Determinism 127

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Technostress 71 Thematic Analysis 100; 101 Therapeutic Relationship 56 Ubiquity 39; 71 Usage 2; 5; 6; 23; 72; 91; 93; 94; 98; 103; 104; 122; 125; 136; 138; 144 Utilitarianism 96; 124; 136 Values 16; 17; 40; 45; 47; 52-54; 59; 93; 97; 98; 118; 125; 126; 132 Virtual Person 5; 13 Virtue Ethics 96; 124; 125

ACRONYMS INDEX

ASIP Health 60 CCNE 62 CIGREF 93 CISS 62 CNAM 90 CNIL 36; 67; 95; 97; 102; 109; 117 CNOM 62 CPS 50; 67 CREC 12 DMP 50-70 DRM 134 HADOPI 134; 144 IAB 23 IDPF 128 IFOP 48 INS 67 INSERM 12 ISE 20 JORF 121 MES 120 ; 136 NIR 14 RFC 23 RSS 50 SES 21 SOX 95; 125 STUDYMODE 21 WHO 71; 72; 86; 87 WRD 78; 86; 87