PURE SELECTION
The Ethics of Preimplantation Genetic Diagnosis and Choosing Children without Abortion
 
 cover

by Christian Munthe




Acta Philosophica Gothoburgensia No. 9.

310 pages in English. Acta Universitatis Gothoburgensis, Göteborg 1999.                                                                                       REVIEWS OF THIS BOOK


ABSTRACT
Preimplantation genetic diagnosis (PGD) is taken to mark the starting-point of a new phase in human reproduction, where the possibility of choosing children on genetic grounds without having to resort to dangerous or ethically controversial procedures (such as abortion) will gradually increase. Ethical and political issues actualised by this development are addressed.
The discussion touches upon issues regarding the moral status of embryos and gametes, the moral import of respecting individual autonomy and its implications for the requirement of informed consent in health-care, the connection between sickness, disability and the value of life, the moral status of possible future people, and the connection between choosing children and eugenic policies of the past. Practical policy issues are adressed on the basis of this as well as an empirical case-study of the introduction of PGD in Sweden.
The book ends up in a set of recommendations regarding the management of research on, introduction and routine use of pure selection, both within health care and from the point of view of society as a whole. It is argued that research on such procedures should be allowed and supported by society. However, tight restrictions regarding the clinical introduction of new procedures in this area is highly desirable. A rough model for implementing such restrictions is also presented. It is further asserted that, although reasons of economy and safety should limit the access to pure selection, society should not apply any explicit restrictions based on ideas regarding how different traits affect a person's quality of life. It is stressed that, in order to avoid a resurrection of eugenic policies of the past, the development in this field underlines the need for continued and strengthened public support to the sick, disabled and mentally retarded.

Keywords: assisted procreation, bioethics, embryo experimentation, eugenics, genetic testing, in vitro fertilisation, medical ethics, medical genetics, polar body biopsy, preconception diagnosis, preimplantation genetic diagnosis, prenatal diagnosis, public policy, reproductive medicine, research ethics, sex preselection.

© Christian Munthe, 1999

Distribution:
ACTA UNIVERSITATIS GOTHOBURGENSIS
Box 222, SE-405 30 Göteborg, Sweden

ISBN 91-7346-362-0
ISSN 0283-2380

CONTENTS






FOREWORD 11

Chapter 1: INTRODUCTION 14

The Issues 16

Particular Applications 16
Policy Issues 17
Research Ethics 17
Plan of the Book 18

Background 20

The Rise of PGD versus Prenatal Diagnosis 20
Ethical Debate Among Medical Specialists 22
Current Techniques and Procedures 24
Future Prospects for Pure Selection 31
Chapter 2: THE RISE OF PGD IN SWEDEN: A CASE STUDY 35

Materials and Methods 36

General Background 39

Conflicts, Doubts and Changes of Plans 41

The 'Genetic Turn' of IVF 41
Distrust within the Working Group 42
Ethical Criticism at Wahlström’s Unit 43
Ethical Discussion at the Local Level 44
The Ethics Advisory Group 44
Department of Clinical Genetics at the Sahlgrenska
University Hospital/East 47
Ethical Discussions at the National Level 48
Ban on Transfer of 'Experimental' Embryos 49
The Government Committee on 'the Unborn Child' 50
The Council for Medical Research 51
The Swedish Medical Association 51
The Swedish Society for Medical Genetics 52
Philosophical Treatment of PGD 52
The National Council for Medical Ethics 53
The Specialists 54
Powerplay and Tactics in the Government 56
Parliament 57
'Premature' Clinical Application 59
Issues and Peculiarities 60
Unreflected Opposition 61
Why PGD for IVF-patients Only? 63
Confusion Regarding the Status of PGD 64
The Embryo Research Act Disarmed 65
Taking the Step from Research to Routine 67
The Problem of Local Ethical Action 76
Chapter 3: ARGUMENTS FOR PURE SELECTION 81

Avoiding Abortion in Genetic Counselling 81

Genetic Counselling 81
Remaining Shortcomings of Prenatal Diagnosis 85
Embryo Destruction is not Abortion ? So What? 88
Improving IVF 90
Restricted Applicability? 91
Improving Birth-rates and Improving Quality 93
Paving the Way for Better Treatment 94
Treatment and Selection 95
Prevention and Autonomy 98
A Step Towards Treatment 100
Chapter 4: THE MORAL STATUS OF EARLY EMBRYOS 102

Utilitarianism and the Destruction of Embryos 105

All Affected Parties are Important 105
Lack of Potential for Enjoying Well-being 105
Early Embryos have Weaker Moral Status 107
What About Numbers? 108
The Official Catholic Position 110
The Argument from Divisibility 112
Potentiality and Species Membership 114
The Morality of Risktaking 115
The Relevance for Pure Selection of the Embryo Debate 117
Pure Selection not Involving Embryos 117
The Importance of Other Affected Parties 118
Embryos and PGD: from Ethics to Politics 119
Chapter 5: IVF-RELATED OBJECTIONS 122

The Value of Additional Children 123

Utilitarianism and Increases in Population 123
The Repugnant Conclusion and the Non-identity Problem 125
The Appeal to Parental Responsibility 129
Supererogation and the Virtue of the Utilitarian View 134
Implications for Pure Selection 136
Against Nature 137
The Catholic Arguments Against IVF 138
The Obscurity of the Unnatural 142
The Technologisation of Procreation 143
Information, Autonomy and Well-being 143
Three Cases for Restricting Autonomy 146
Are Autonomy Restrictions Absolutely Prohibited? 150
”Never as a Means Only” 151
Anti-paternalism 152
Utilitarianism 154
Utilitarianism and Autonomy at a Societal Level 155
Chapter 6: RISK OBJECTIONS 159

Risks to Resulting Children 159

What Are the Risks? 160
Preliminary Considerations 161
No Harm Done ? No Wrong Done? 163
Wrong without Harm 166
Risks to the Woman 169
What are the Risks? 170
Preliminary Considerations 172
PGD as Infertility-treatment: First Round 174
Responsibility, Permissibility, Rationality and Autonomy 175
PGD as Infertility-treatment: Second Round 178
PGD for Selection Against Disorders 180
PGD for Selection of Non-medical Characteristics 183
But What if the Risks Can be Substantially Reduced? 187
Pure Selection and Informed Consent 188
Uncertainty, Ambiguity and Bias 190
Two Views of Informed Consent 195
Autonomy, Rationality and Quality of Information 197
Who Should be Offered Pure Selection? 202
Chapter 7: PURE SELECTION IN SOCIETY 204

From Severe to Milder Conditions 205

The Selective Supermarket 210

Individual Choices 214
Social Practice 218
Is the Selective Supermarket Eugenic? 230
Scenarios of Discrimination 235
State Pressures 236
The 'Backdoor Eugenics' Scenario 239
Chapter 8: REGULATING PURE SELECTION 246

Research on Pure Selection 246

Why Bans on Research do not Work 247
The Importance of Public Funding 248
Privately Financed Research 249
From Research to Clinical Application 250
A System for Control 251
The Content of the Control 252
Pure Selection in Routine Health Care 255
Safeguarding the Quality of Routine Pure Selection 256
Pure Selection on Non-medical Grounds 258
Bans on Special Targets: 1. Unaffected Carriers 262
Bans on Special Targets: 2. Sex Preselection 264
Bans on Special Targets: 3. Sexual Orientation 266
Making Priorities within Health Care 269
Care and Support for the Sick, Disabled and Mentally Retarded 272
GLOSSARY OF ABBREVIATIONS AND TECHNICAL TERMS 276

REFERENCES 284

INDEX 302


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