RESPONSIHLE GENETICS

Faunding Co-Editor Stuart F. Spicker

Philosophy and Medicine

VOLUME70

Editor

H. Tristram Engelhardt, Jr., Department of Philosophy, Rice University, and Baylor College of Medicine, Houston, Texas

Associate Editor

Kevin Wm. Wildes, S.J., Department of Philosophy and Kennedy Institute of Ethics, Georgetown University, Washington, D. C.

Editorial Board

George J. Agich, Department of Bioethics, The Cleveland Clinic Foundation, Cleveland, Ohio Niebolas Capaldi, Department of Philosophy, University ofTulsa, Tulsa, Oklahoma Edmund Erde, University of Medicine and Dentistry of New Jersey, Stratford, NewJersey Erle T. Juengst, Center for Biomedical Ethics, Case Western Reserve University, Cleveland, Ohio Christopher Tollefsen, Department of Philosophy, University of South Carolina, Columbia, South Carolina Becky White, Department of Philosophy, Califomia State University, Chico, Califomia

The titles published in this series are listed at the end of this volume

RESPONSIHLE GENETICS THE MORAL RESPONSIBILITY OF

GENETICISTS FOR THE CONSEQUENCES OF HUMAN GENETICS RESEARCH

by

ANDERSNORDGREN Department of Public Health and Ca ring Seiences

(Biomedical Ethics),

Uppsala University, Uppsala, Sweden

SPRINGER-SCIENCE+BUSINESS MEDIA, B.V.

A C.I.P. Catalogue record for this book is available from the Library of Congress.

Printedon acid-free paper

All Rights Reserved © 2001 Springer Science+Business Media Dordrecht

Originally published by Kluwer Academic Publishers in 2001 Softcoverreprint ofthe bardeover 1st edition 2001

No part of this publication may be reproduced or utilized in any form or by any means, electronic, mechanical, including photocopying, recording or by any

information storage and retrieval system, without written permission from the copyright owner.

ISBN 978-90-481-5907-9 ISBN 978-94-015-9741-8 (eBook) DOI 10.1007/978-94-015-9741-8

To my father and mother

lt is impossible in the modern world for a man of science to say with any honesty, "My business is to provide knowledge, and what use is made ofthe knowledge is not my responsibility."

Bertrand Russen, 1960.

TABLE OF CONTENTS

ACKNOWLEDGMENTS

INTRODUCTION

CHAPTER 1. MORAL RESPONSIBILITY AND MORAL IMAGINATION 1. The Metaphor of Moral Responsibility 2. Engineering or 'Tinkering' in Moral Reasoning? 3. Imaginative Casuistry vs. Other Normative Positions 4. Imaginative Casuistry in Bioethics

CHAPTER 2. MORAL RESPONSIBILITY IN SCIENCE 1. Research Ethics 2. Responsibility 'of' 3. Responsibility 'to' 4. Responsibility 'for': Choice of Subject 5. Responsibility 'for': Research and Publication 6. Responsibility 'for': Application 7. Content and Form of Responsibility: General Proposals

CHAPTER 3. THE HUMAN GENOME PROJECT: JUSTIFICATION, PROMOTION, AND ACCESS TO RESULTS 1. Summary and Application: Responsihle Genetics 2. Dialogue and the Human Genome Project 3. Justification of the HGP 4. Promotion of the HGP 5. Genetic Knowledge: Open Access or Private Patents?

CHAPTER 4. GENE HUNTING, GENETIC TESTING, AND GENETICALL Y TAILOR-MADE DRUGS 1. Dialogue in Genetic Research and Application 2. Gene Hunting in Families 3. Gene Hunting in Ethnic Groups 4. Genetic Testing and Genetic Counseling 5. Genetic Screening and Public Health Work 6. Genetic Information in Employment and Insurance 7. Genetically Tailor-Made Drugs

vii

ix

xi

1 15 25 41

51 51 54 64 69 73 76 84

91 91 92 96

105 114

127 127 130 136 146 156 160 165

CHAPTER 5. GENETIC MODIFICATION OF HUMANS AND LABORATORY ANIMALS 171 1. Dialogue and Gene Therapy 171 2. Germline Gene Therapy 182 3. Genetic Enhancement 199 4. Animals Used in Human Genetics Research 200

CHAPTER 6. EUGENICS AND THE LONG TERM GOALS OF REPROGENETIC MEDICINE 215 1. Responsibility for Applications ofGenetics: Professional Policy 215 2. Dialogue on the Long Term Goals of Reprogenetic Medicine 218 3. Learning from History: Eugenics 223 4. Genotypic Prevention vs. Reproductive Autonomy: Three Prototypical Views 229 5. Proposals regarding the Long Term Goals of Reprogenetic Medicine 248

BIBLIOGRAPHY 261

INDEX 271

viii

ACKNOWLEDGMENTS

This book could not have been written without the support and input from others. Throughout the project I have been supported by Carl-Henric Grenholm, Professor of Ethics, and Ulf G. Pettersson, Professor of Medical Genetics, both at Uppsala University, Sweden. I am very grateful to them.

I am also very grateful to Thomas H. Murray (now President of the Hastings Center, Garrison NY) for accepting me as a Visiting Scholar at the Center for Biomedical Ethics, Case Western Reserve University, Cleveland OH, in the Spring of 1997. He made my stay very worthwhile and opened many doors. During my stay at the Center and afterwards I have also been given great support and good advice by Eric T. Juengst.

Moreover, I would like to thank the following persons for consenting to discuss with me some of the issues in this book at an early stage of my research: George Annas, Adrienne Asch, Jonathan Beckwith, Stephanie Bird, Carl Reinhold Bräkenhielm, Robert Cook-Deegan, Sharon Durfy, Troy Duster, Ezekiel Emanuel, Mark Frankel, Mats G. Hansson, Gunnar von Heijne, Albert Jonsen, Rihito Kimura, Barbara Koenig, Bemard Lo, Eric Meslin, Amo Motulsky, Marie Nordström, Diane Paul, Stephen Post, Danielle Ripich, Mark Sagoff, Gunnar Tibell, Robert Wachbroit, LeRoy Walters, Charles Weiner, and Claes-Göran Westrin.

Let me stress that the views expressed in the book are all mine. They are not necessarily shared by the persons mentioned above.

I am also grateful to the Centre for Research Ethics and the Research Program Ethics in Biomedicine at Uppsala University for giving me the opportunity to carry out the research behind the study in a stimulating academic environment.

The language has been examined by Judith Rinkerand I would like to thank her. Finally, I would like to thank two publishers for allowing me to include parts of

papers published elsewhere. Parts of Chapter 1 have appeared in Theoretical Medicine and Bioethics. These are published with permission of Kluwer Academic Publishers, Dordrecht (Nordgren, 1998a). Parts of Chapter 6 have been published in Community Genetics, and are included with permission of Karger, Basel (Nordgren, 1998b).

Research for the study has been funded by a grant from The Swedish Medical Research Council.

Uppsala, September 2001 Anders Nordgren

IX

INTRODUCTION

MORAL RESPONSIBILITY AND THE HUMAN GENOME PROJECT

The Human Genome Project (HGP) is now almost completed. A draft of the full DNA sequence of the human genome has recently been published (lnt. Hum. Gen. Seq. Cons., 2001; Venter et al., 2001). The project started in 1990 and was planned to be completed fifteen years later. lt is now clearly ahead of schedule. But even when the project is completed much work remains-the analysis of the function of the 30-40,000 genes in the human genome is beyond the scope of the project and willlast for decades.

However, even before the HGP started, it was rather controversial from an ethical point of view; not so much because of the sequencing work as such, but because of its anticipated consequences. The results of the project might be used, for example, in developing genetic tests, genetically tailor-made drugs, and gene therapies. Some people fear that genetic testing may lead to discrimination in insurance and at the workplace. Some view the pharmaceutical companies' research on genetically tailor-made drugs as an unacceptable commercialization of science. Some anticipate that the development of gene therapy will give rise to a society in which parents want to design perfect babies with genetic enhancement techniques. This forces us to ask: should the HGP perhaps never have been initiated in the first place? Or more importantly: how should the implications be handled now when the project is almost completed?

Some of the ethical issues were anticipated at the planning stage of the project. Therefore, right from the start the funding agencies allocated a certain percentage to ELSI (Ethical, Legaland Social Implications) research. Some people view this as a way for the scientific community to take moral responsibility for the HGP and its consequences. Critics maintain that ELSI research is intended merely to gain acceptance of risky technologies, as a way of making the research legitimate.

This dispute raises the more general question of moral responsibility in human genetics research. What does moral responsibility really mean in this kind of research? What moral responsibility lies with the geneticists as individuals and as a community for the choice of topic, experimental work, publication, and application? Responsibility is not just a matter of blame or praise. First and foremost, it is a normative issue: What can reasonably be the moral obligations of scientists doing this kind of research? What moral responsibility lies with the geneticists for its consequences? Do geneticists have a responsibility for trying to affect other people's applications of their findings?

xi

xii INTRODUCTION

One might think that such questions about moral responsibility have been discussed a great deal. This is, however, not the case. To be sure, the rhetoric of 'scientific responsibility' is prominent in the debate on the research ethics of genetics, but its meaning is very seldom clarified. In the ELSI research, it is commonly the actual and possible consequences as such that have been analyzed and discussed. The issue of the moral responsibility of the geneticists for these consequences has been very much neglected. lt is, however, the key issue of this book.

HUMAN GENETICS AND THE ROLE OF HGP

The Human Genome Project has already been and will in the future continue to be of key importance in many different branches of human genetics research including medical genetics, clinical genetics, pharmacogenomics, and gene therapy research. It is an international endeavor coordinated by the Human Genome Organisation (HUGO), founded in 1988. The coordination concems the laboratory work itself as weil as the administration of the rapidly growing amount of information about the genomes of humans and model organisms (McKusick, 1989; Br. Med. Assoc., 1998, pp. 193-194).1

The overall objective of the HGP is to map and sequence the human genome. More precisely, the HGP is a project designed to construct genetic and physical maps of the human genome, to determine the complete nucleotide sequence of the human DNA, to localize the genes of the human genome, and to conduct similar analyses on the genomes of some other organisms used as models. Examples of such model organisms are the roundworm C. Elegans, yeast, the bacterium E. coli., the mouse, and the fruit fly (NCHGR, 1991; NHGRI, 1997).'

The HGP aims at understanding the structure of the human genes. The understanding of the function of the genes is beyond the scope of the project in the strict sense. But, of course, alongside the mapping and the sequencing, analyses of the function of genes have already started and will continue for a long time after the project is completed (NHGRI, 1997, pp. 61-67). The best way to understand what the HGP is all about is to view it as a kind of tool-making (NCHGR, 1991; Kingsbury, 1997). With the help of the maps and the knowledge of the sequence of the human genome, many other kinds of human genetics research, such as function analysis, genetic drug research, and gene therapy research, can be carried out with precision.

lt is important to note that the more specific objectives of human genome research may vary among different countries. In a sense it might be more appropriate to talk about many different human genome projects than a single one.

1 See also URL: www.gene.ucl.ac.uk/hugo/. 2 See also URL: www.nhgri.nih.gov:80/HGP/ and URL: www.er.doe.gov/production/ober/hug_top.html.

INTRODUCTION xiii

From the point of view of HUGO, however, one may speak about one international project (Cook-Deegan, 1994, pp. 187-230).3 lt is also important to note that the HGP in the narrow sense is publicly funded, or-in some countries-funded by grants from foundations like the Wellcome Trust. However, there are also very important commercial Counterparts, not least the sequencing project carried out by Celera Genomics with J. Craig Venter as principal scientist (Venter et al., 2001).'

The mostextensive mapping and sequencing efforts are made in the US. In much of the Iiterature about the HGP it is the US project that is explicitly referred to, not the international one. The main agencies responsible for planning and developing the project in this country were the Department of Energy (DOE) and the National Institutes of Health (NIH). The planning process led to the publication of a joint researchplan in October 1990, signifying the start of the US project (Cook-Deegan, 1994, pp. 161-185).5

If we turn to Europe, it is apparent that by the end of the 1980s only a few teams were mapping and sequencing the human genome. Most of the work was general genetics research, including studies of the function of genes and studies of nonhuman genomes. However, in 1990 the research program Human Genome Analysis was formally announced by the European Community Council of Ministers. The effort was concentrated on specific diseases and particularly interesting areas in the human genome (Hallen, Klepsch, 1995). This can also be seen in the BIOMED programs replacing the original Human Genome Analysis program (Hallen, 1998).

In the literatme on the HGP there are numerous references to 'the' human genome. This signifies the 'basic' human genome, i.e., the standard genetic information contained in a typical composite of the 'normal' human chromosomes. This 'basic' human genome is an abstraction that can be compared to the human skeleton. However, it should be noted that there is no ideal example of the genome. In fact, much of the interest in human genome research has to do with variations among individual humans. The HGP is often justified by reference to the identification of disease genes, i.e., genesthat deviate from the 'standard' genome.

There are other kinds of human genome research beside the HGP. One is function analysis, which has already started but will continue for many decades after the project in the strict sense is completed. Another kind is 'population genomics', for instance within the Human Genome Diversity Project (HGDP). The aim of this kind of research is to collect and analyze genetic information from ethnic groups araund the world.6

3 See also URL: www.gene.ucl.ac.uk!hugo/. 4 See also URL: www.celera.com, and URL: www.incyte.com. 5 See also URL: www.nhgri.nih.gov:SO/HGP/ and URL: www.er.doe.gov/productionlober/hug_top.html. 6 See URL: www.stanford.edu/group/morrinst/hgdp/summary93.html. See also British Medical Association, 1998, pp. 195.

xiv INTRODUCTION

The tools made available by the HGP, however, are used not only in function analysis and population genomics, but also in clinical genetics, pharrnacogenomics and gene therapy research. Such research was, of course, to a varying extent carried out even before any useful results emerged from the Human Genome Project. It is obvious, however, that the genetic knowledge provided by the HGP gives it much better tools. It is therefore reasonable to view such research as applications of the knowledge gained through the project. Another reason for this is that in applications for funding of human genome research these kinds of applications are often referred to as expected beneficial outcomes of the research.

ETHICAL IMPLICATIONS

Human genetics research has important ethical implications for many different agents and parties such as individual patients and their farnilies, different social and ethnic groups, doctors and genetic counselors, public and private health care, biotechnological companies, insurance companies, employers, the govemment, the general public, and, of course, the geneticists themselves. In this study, I shall focus primarily on the moral responsibility of the geneticists. The reason for this is, as I have stressed above, that this aspect is very seldom reflected on in the ELSI literature. The possible use and abuse of the applications in society and health care have been discussed much more thoroughly.

The Moral Responsibility ofthe Geneticists

What responsibility do the geneticists have for their choice of subject (topic), the research process in the narrow sense (empirical and theoretical work), the publication of the results, and the application of these results? As the subtitle of the book indicates, I focus in particular on the responsibility of geneticists for the consequences of their research. With regard to these consequences, it is sometimes useful to make a distinction between those that are direct and those that are indirect. The distinction, however, is not strict. The direct consequences of research are those appearing in the research process in itself, for example, the consequences for human subjects participating in a study. The indirect consequences are those of the results of the research after publication, for example, the application of genetic knowledge in other kinds of research or in society. However, what counts as direct and indirect consequences depends on exactly what kind of genetics research we are talking about. For instance, the consequences for human subjects participating in gene therapy research are direct consequences of this research, while the gene therapy research itself, at least to some extent, can be viewed as an indirect consequence of genome research, since it uses knowledge gained in genome research.

Moreover, it is sometimes essential to make a distinction between the responsibility of geneticists as individuals and as a community, between the

INTRODUCTION XV

responsibility of geneticists in the beginning of their scientific career and those high in the academic hierarchy, and between the responsibility of geneticists working at universities and those working in biotechnological companies. One very important aspect concems professional policy. What policy should the genetics community have on, for instance, the treatment of human subjects or the applications of genetic knowledge in society? It should be noted that the professional policy of the genetics community is not necessarily identical to the public policy of the govemment.

This study is in two respects wider in scope than is common in the ELSI literature. As a background to my discussion of the ethical implications of human genetics research, I will devote the frrst two chapters to more general issues. In Chapter One, I shall discuss the concept of moral responsibility in general. I shall also propose a new ethical framework based on certain empirical findings of the relatively new scientific field called cognitive semantics. Cognitive semantics stresses the metaphorical character of key human concepts. This ethical framework sheds light on the discussion of the ethical implications of human genetics research. lt helps us to understand what ethical dispute is all about in this context, and provides a starting point for normative suggestions. In the second chapter, I shall discuss research ethics. Here I shall focus on the concept of moral responsibility of scientists in general. This will put the moral responsibility of the geneticists into a broader perspective. What do we mean by 'moral responsibility' in this specific context? For what are geneticists responsible? To whom are they responsible? Are there any differences in the moral responsibility of scientists doing human genetics research compared to the responsibility of other scientists?

In discussing the moral responsibility of geneticists, it is important to make a distinction between intemal and extemal perspectives. lotemal perspectives are the perspectives of the geneticists themselves. Extemal perspectives are those of other people such as philosophers, bioethicists, sociologists, joumalists, politicians, the general public, etc. Both kinds of perspectives are legitimate. The intemal perspectives are legitimate because it is the geneticists who are carrying out the research. Certainly, they are entitled to make moral judgments on their own work. The extemal perspectives are legitimate because human genetics research is a social activity influencing the remainder of society in various ways, because it uses the societal infrastructure, and because it is to a large extent funded by taxes. Both kinds of perspectives are also necessary in order to work out well-considered ethical guidelines and policies. Each kind has its advantages as weil as disadvantages. The geneticists run the risk of becoming 'home blind' and only seeing their own side of things. People with extemal perspectives might have a broader societal perspective. A disadvantage of the extemal perspectives, however, is limited knowledge of scientific facts and limited experience of scientific practice. Deep knowledge and first-band experience is, on the other band, the advantage of the intemal perspectives. Dialogue isthebest way of handling this situation. In this study, I shall discuss the moral responsibility of scientists conducting human genetics research but

xvi INTRODUCTION

I will do this from an extemal perspective since I am a bioethicist, not a geneticist. The book should be viewed as a contribution to such a dialogue.

What is more precisely the role of bioethicists in this dialogue? Some would argue that their only task is to analyze the ethical problems and the arguments. Others maintain that the bioethicists should also put forward normative proposals. With some hesitation, I support the latter view. Bioethicists have a special training in analyzing ethical arguments as weil as knowledge of ethical theory and may therefore to some extent contribute to clarifying the discussion on the ethical implications of genetics. This training and knowledge may also be of some help in constructing normative proposals. However, this does not guarantee that the normative proposals of the bioethicists are more well-founded than other peoples', or that their views are more interesting. In this book I have an analytical as weil as a constructive approach. I will analyze arguments related to many different ethical issues raised by genetics but I will also put forward certain normative proposals.

lt is important that the bioethicists do not carry out their analyses in the abstract without contact with what is really going on in science. For instance, they should be aware of the struggle for power that affects the development of research. Genetics research is not only a value-laden activity, but also an activity situated in a 'power context' as are all other social activities. This can, for example, be seen very clearly in the book The Gene Wars by Robert Cook-Deegan, which is the most authoritative study to date on the origins of the HGP in the US. Already the metaphor in the book's title illustrates the point (Cook-Deegan, 1994).

Why Focus on Moral Responsibility?

Throughout this study I focus on the concept of moral responsibility. There are several reasons for this. One is that the concept of responsibility appears to be particularly relevant to problems in applied ethics, because it has such a central social dimension. Applied ethics does not merely concem the individual who acts. Our acts affect other people and they react in their turn. Acts are performed in a social context. We are always responsible 'to' other parties for our actions. Moreover, we often act together with other people and belong to more or less clearly defined social groups. This raises the question of a shared responsibility. All this is also true of scientists. Scientific research is a social activity and arguably the members of the scientific community have a shared responsibility for its activities.

Another reason for focusing on the concept of responsibility are the immensely increased powers of humans to affect their own future as weil as the future of the planet at large. These powers are to a large extent due to technological advances made on the basis of scientific research. One clear example is human genetics and its applications, the main topic of this book. This increased technological power brings the issue of responsibility to the forefront of the ethical discussion, as, for instance, the philosopher Hans Jonas has argued (Jonas, 1984).

INTRODUCTION xvii

A third reason is that the concept of responsibility seems especially weil suited to a pluralistic society. It allows for the large gray zones so typical of a society with many different and often conflicting values and norms. The concept of responsibility appears particularly useful in the discussion of the ethical implications of human genetics research. This research continuously raises new ethical problems and there is often no consensus regarding their solution. Different parties might agree that they should act responsibly, although they might have somewhat divergent views on what this means more precisely. The notion of moral responsibility, however, may be a possible meeting-place for people with different value commitments and perhaps even constitute a common ethical platform.

However, 'responsibility' is an elusive term. It is often used, but seldom defined. An important task in this study will therefore be to analyze its meaning. I shall devote some space in Chapter I to a general analysis, and some space in Chapter 2 to an analysis of the concept in a scientific context.

The title of this book, Responsihle Genetics, illustrates the centrality of the concept of responsibility for my discussion of the ethical implications of human genetics research.7 This might Iead the reader to think that the book primarily proposes certain restrictions on genetics research and its application. Let me stress, however, that although one important task for bioethics certainly is to soggest certain restrictions, responsibility is not just to say 'no'. lt can be to say 'yes' as weil. The title of the book is intended to include even such a positive view.

Policy Declarations and Conventions

Some of the most important ethical questions raised by human genetics concern the professional policy of the genelies community. Ethical considerations are at the very basis of policy-making. In my discussion of ethical issues in human genetics, I will, therefore, now and then discuss certain policy declarations and conventions. Examples are the Convention on Human Rights and Biomedicine issued by the Council of Europe, UNESCO's Universal Declaration on the Human Genome and Human Rights, and CIOMS's Declaration of lnuyama.8 The views of these ethical codes diverge to some extent, and, of course, their normative statuses differ. Both these aspects, however, make them interesting in an analysis of the issue of moral responsibility in human genetics.

In this study, I will argue for a kind of casuistry, i.e. a case-by-case approach to ethics. But does not such an approach exclude policy? I do not think so (cf. Strong, 1997, p. 75). Sensitivity for the particularities of individual cases does not rule out a recognition of common characteristics. There are not only individual cases, but also

7 Note, however, that the title does not allude to the "Council for Responsible Genetics". Cf. www.gene­watch.org. 8 See Council of Europe, 1996, URL: www.unesco.org/ethicsl, and CIOMS (Council for International Organisations of Medical Sciences), 1995.

xviii INTRODUCTION

types of cases. Moreover, ethical principles can be viewed as rules of thumb regarding prototype cases or types of prototype cases. They do not have to be interpreted as universal and absolute. It is quite possible for policy documents to express a need for a context-sensitive balancing of conflicting principles. Furtherrnore, casuistry in biomedicine does not necessarily have to focus exclusively on clinical issues related to individual patients in special circumstances. It is completely possible from a casuistic point of view to address issues of broad social concern as is commonly done in policy documents. As Baruch Brody has recently shown, a more or less casuistic approach can actually be found in many official policy documents on biomedical research (Brody, 1998, pp. 202-208). Policy excludes a casuistic approach only if policy implies universal and absolute ethical principles, and this not at all necessary.

In discussing policy issues related to genetics, I shall primarily focus on the professional policy of the genetics community, not on the public policy of the government. In doing so, I will, however, indirectly discuss public policy. An important question concerns the direction in which the genetics community should try to affect public policy. The reason for focusing on professional instead of public policy is that this study as a whole focuses on the responsibility of the geneticists, not that of politicians.

Aims of the Study

In short, the objectives of this study are: (1) to analyze the concept ofmoral responsibility in human genetics research, (2) to pinpoint ethical issues that responsible geneticists should take into consideration, and (3) to present normative suggestions with regard to some of these issues, as a contribution to an interdisciplinary dialogue. In order to reach these goals, I will analyze fundamental bioethical concepts and principles on the basis of the empirical findings of cognitive semantics and propose a new ethical framework, 'imaginative casuistry', taking these empirical findings as a point of departure.

Let me also very briefly answer two possible objections to the general approach of the study. The first concerns scope. Some critics might say that I want to do too much, and that I should Iimit myself to just a few ethical problems raised by human genetics and examine them more deeply. However, there arealready quite a number of books and articles written with such more restricted goals, and there is certainly a need for a book with a more general and integrative approach. Some ethical issues are best approached broadly. This is clearly the case with the issue of the moral responsibility of geneticists.

The second objection concerns method. Some critics might say that the analytic method used is too imprecise to fulfil the demands of acadernic philosophy.

INTRODUCTION xix

However, Iet me pointout that the study is not intended tobe a piece of philosophy in a narrow academic sense. The objective is not to present a deep, technical analysis of philosophical problems raised by human genetics. On the contrary, the study should be understood as a contribution to an interdisciplinary dialogue. This means that too technical a language must be avoided.

Outline

With all this in mind, the first task in this study will be to analyze the concept of moral responsibility. This will be done in Chapter 1, where I shall also propose a new ethical framework. The second task will be to discuss in general terms the issue of moral responsibility in science (Chapter 2). After that, the remainder of the book is devoted to different ethical C()nsiderations which scientists doing human genetics research should reasonably take into account.

In Chapter 3, I shall discuss various aspects of the Human Genome Project that responsible geneticists should consider. First, I discuss the choice of subject as such. Can the HGP be justified, and if so, how? I also discuss the methods of promotion of the project, not least the use of metaphors. Finally, I turn to the issue of access to the results of the project. A central question in this section concerns gene patenting.

Chapters 4 and 5 focus on certain direct and indirect consequences of various types of human genetics research which responsible geneticists should take into account. How should human subjects and their families be treated in genetic studies? How should small ethnic groups be treated in order to justify the Human Genome Diversity Project being carried out? What ethical problems arise in the application of genetic knowledge in genetic testing and screening? Are there any special ethical problems raised by research on genetically tailor-made drugs? What ethical problems are raised by somatic gene therapy research? Would it be morally responsible to carry out germline gene therapy research and genetic enhancement research? I shall also discuss the use of animals in human genetics research, for example as disease models.

The final chapter (Chapter 6) concerns the application of genetics in reproductive medicine ('reprogenetic medicine'). What should be the long term goals of reprogenetic medicine? What should the professional policy of the genetics community take into account? An important question in this context concerns eugenics. For many geneticists in the early decades of this century, social responsibility implied that eugenics should be promoted. Today most geneticists would argue that social responsibility requires that eugenics be counteracted. This means that, for historical reasons at least, the issue of eugenics is relevant to the issue of the moral responsibility of human geneticists.