Genetics and the Quality of Life PDF
Preview Genetics and the Quality of Life
Genetics and the Quality of Life edited by Charles Birch and Paul Abrecht PERGAMON PRESS Pergamon Press (Australia) Pty Limited, P.O. Box 544, Potts Point, NSW, 2011 Pergamon Press Ltd, Headington Hill Hall, Oxford OX3 OBW Pergamon Press Inc., Fairview Park, Elmsford, NY 10523 First published 1975 © 1975 Charles Birch on behalf of World Council of Churches, Geneva Printed in Singapore by Toppan Printing Co (S) Pte Ltd National Library of Australia Cataloguing-in-Publication entry: Genetics and the quality of life: [papers of a symposium]/ edited by Charles Birch [and] Paul Abrecht. —Rushcutters Bay, N.S.W.: Pergamon Press, 1975 Index. Symposium held in Zurich, Sw., 1973. Includes bibliographies. ISBN 0 08 018210 0. ISBN 0 08 019861 9 Paperback. 1. Genetics—Experiments—Moral and religious aspects— Congresses. I. Birch, Charles, ed. II Abrecht, Paul, joint ed. 174.9574 This book is sold subject to the condition that it shall not, by way of trade, be lent, resold, hired out, or otherwise disposed of without the publisher's consent, in any form of binding or cover other than that in which it is published. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise, without permission in writing from the publishers. IV Grateful acknowledgement is made to Annette Robinson and Annette Halcomb for their meticulous and painstaking work in seeing this work through to publication. vn PART I Introduction 2 GENETICS AND THE QUALITY OF LIFE This volume contains the papers and the report of a consultation on Genetics and the Quality of Life, in Zurich, 25-29 June 1973, organized by the sub-unit on Church and Society of the World Council of Churches in cooperation with the Christian Medical Commission. It was attended by thirty-five persons including clinical geneticists, population geneticists, immuno-geneticists, reproductive biologists, pediatricians, psychiatrists, physicians, obstetricians, ethicists, theolo gians, social workers, lawyers, legislators and politicians. The group was unique compared with other groups drawn together for similar purposes by representing many different social and geographical per spectives, and by being ecumenical in character, including as it did Protestants, Orthodox and Roman Catholics of widely differing views, as well as some with no particular religious commitment. A list of participants is included at the end of the volume. Ecumenical interest in the ethical issues resulting from develop ments in the biological sciences first arose at a conference on Technology, Faith, and the Future of Man in Geneva, July 1970. In June 1971, the Working Committee on Church and Society, meeting in Nemi, Italy, decided to undertake 'a pilot study in some very specific areas of scientific activity which generate disturbing problems'. The field of genetics was chosen, not because the issues raised are essentially different from those raised by other technologies, but because they are immediately recognizable by men and women everywhere as important for their marriages, for their children's future as well as for the future of the human race, and because these issues touch on many deep- rooted religious and cultural attitudes. The specific genetic problem chosen had to do with the ethical ques tions that arise from the application of modern methods for detecting and reducing the incidence of genetic disease in the community. The Nemi meeting therefore recommended that 'the World Council of Churches establish a panel consisting primarily of geneticists and theolo gians' to advise it and its member churches on fundamental questions of genetic counselling, foetal diagnosis and abortion, and genetic correction. The recommendation was placed before the Executive Committee of the World Council of Churches at its meeting in Sofia, Bulgaria (5-9 September 1971), and before the meeting of the Central Com mittee of the Council in Utrecht, August 1972. In approving the plan for a panel the Central Committee noted: The Committee accepts the terms of reference outlined for this panel, with out necessarily endorsing all the assumptions of the document by the INTRODUCTION 3 Working Committee. The Committee emphasizes the importance of having on the panel geneticists with a broad understanding of the social responsi bility of their science and sensitivity to Christian conceptions of life; the panel should also include theologians, ethicists and other church members concerned with the human, social and spiritual issues at stake in such experiments of genetic correction.' (Minutes of the Central Committee of the World Council of Churches, Utrecht, August 1972, pp. 43-44.) In preparation for the meeting in Zurich, nineteen of the participants prepared papers on one of five topics: • Ethical and Psychiatric Problems of Genetic Counselling • Social and Ethical Problems in Caring for Genetically Handicapped Children • Political and Social Issues in the Public Discussion of the Prevention of Genetic Defects • Ethical Problems in Foetal Diagnosis and Abortion • Ethical and Cultural Problems Raised by Eugenics. Most of these papers were circulated in advance of the meeting and were discussed in two days of plenary sessions under the chairmanship of Professor Charles Birch (Australia). The panel then divided into three Working Groups for drafting the report and conclusions: Genetic Counselling Chairman: Fr. Paul Verghese (India) Vice-Chairman: Prof. R. Murray (USA) Foetal Diagnosis and Selective Abortion Chairman: Prof. Roger Shinn (USA) Vice-Chairman: Prof. A. E. Boyo (Nigeria) Political, Social and Ethical Implications of Eugenic Programmes Chairman: Prof. Bentley Glass (USA) Vice-Chairman: Dr R. G. Edwards (UK) The panel reassembled in plenary on the final day to review the draft reports. These reports as amended and revised in plenary session were committed to a drafting committee who produced the present integrated report and findings based on the material of the Working Groups. The panel restricted its considerations to genetic procedures now in practice or about to be practised. It deliberately did not deal with highly speculative proposals such as cloning and 'positive genetics'. The pur pose of this restriction was to establish ethical guidelines where most needed now, and to examine a number of specific areas of concern where examination might serve as models for more extensive studies. 4 GENETICS AND THE QUALITY OF LIFE As far as possible technical terms have been avoided, but where this has not been possible the terms used are defined in a glossary appended at the end of the document. Clearly this report is not the final word on the issues posed. Indeed the panel was conscious throughout that it was wrestling with some questions on which there could be generally no clear ethical guidance and on which opinions within the panel itself differed greatly. Never theless, a great deal of unanimity was achieved and so the findings of the consultation do mark an advance in presenting some guide lines for the future. Charles Birch Paul Abrecht CHAPTER 1 Genetics and moral responsibility Charles Birch School of Biological Sciences, University of Sydney, Australia Each new power won by man is a power over man as well. C. S. Lewis (1965) The inequality of man is a consequence of genetic and environmental differences. We have tended to believe that whereas a lot could be done about reducing environmental inequality, little if anything could be done about reducing genetic inequality. The situation is now different. This decade has brought advances in genetics that make possible the practice of certain eugenic programmes hitherto impossible. Negative eugenics, the elimination or reduction of deleterious genes, now has practicable programmes operating in many countries. Positive genetics, procedures to increase 'desirable' genes, has hypothetical programmes which may, within a few years, become practicable. The objective of negative eugenics, to reduce the incidence of genetic disease, is a rational and laudable one. It can be regarded as an exten sion by man of what happens without his intervention already. One out of every 130 conceptions ends before the mother realizes she is pregnant because the fertilized egg (probably defective) never attaches itself to the uterus. Some 25 per cent of all conceptions fail to survive to birth and of these a third have identifiable chromosomal abnor malities. Of those that are born, three out of every 100 have some genetic defect. The hypothetical schemes for 'improving' the genetic constitution of man by positive eugenics, selective breeding and other means, is much more debatable. There is the objection of incursion into human free dom and the dilemma as to which qualities to breed for (Kass 1971). Gene therapy may soon be practicable to ameliorate some genetic diseases but as yet advances are not such as to warrant its use on human patients (Friedmann and Roblin 1972). Concerning positive eugenics and the future, Lerner (1968) has said, 'Clearly, whatever biological problems the wonders of euphenics and genetical engineering may solve, they will create many unprecedented social and ethical GENETICS AND MORAL RESPONSIBILITY 7 problems, for the solution of which much collective wisdom will be needed. The requisite wisdom is unlikely to come from the genetical engineers alone, because it involves moral issues on which they are not experts. The traditional ethical guidelines have come from religion, but the new religion of science and technology that is arising, with its hierachy of scientists instead of priests, with its sacred language of mathematics instead of Latin, with its sacrifices of traffic casualties instead of heretics, and with space exploration for its Crusades, is as yet not capable of providing any.' These words of wisdom are as applicable to the problems of negative eugenics which are already with us and which therefore have an urgency greater than is the case with positive eugenics. The medical profession has already accepted major responsibility in the issues of negative genetics but this profession has both evolved and is organized in a way that tends not to equip it for handling these responsibilities. Nor are the various community and counselling services of churches and other organizations ready to deal with these urgent problems. Genetically determined debility versus socially determined debility Before proceeding to consider the sorts of moral responsibilities that negative eugenics presents to us, there is a prior issue to consider. There are those who, while recognizing the ethical problems raised by eugenics, nevertheless consider these to be quite unimportant matters for man's attention at present. There are two sorts of argument for this view. (1) The problems raised by the 'quantity' of people in the world are far more urgent than those to do with the genetical 'quality' of people. It is the population explosion, not the fact that a small propor tion of people have genetic diseases, that should be engaging our atten tion. If it were possible to quantify human suffering, the human suffer ing caused by over-population would be seen to dominate the scene in most places in the world. Moreover, besides the quantity of people there are other major contributory causes to human misery that rank much higher than genetic disease. Factors such as poverty, malnutrition and social deprivation have a variety of causes in addition to over population. The vast majority of people are born with a 'normal' complement of genes. They are normal genetically, but their genes are never given a chance because of sub-optimal environments they live in. According to a report of one United Nations agency, 100 million children in the world today will grow up without a chance of becoming normal healthy people. These are the poor, underprivileged, overpopulated and hungry children of one-third of the world whose families have to live on less 8 GENETICS AND THE QUALITY OF LIFE than $200 a year. In many developing countries 50 per cent of the children who reach the age of one year will be dead by the age of five years from infection superimposed on malnutrition. In the develop ing countries as a whole the population/doctor ratio in the capital cities may be less than 1,000:1 and in the rural areas and slums it is often 10,000:1 and can even exceed 100,000:1. This, itself, is largely a product of inflicting western style medical education and practice on countries with quite different needs. The chief and overwhelming ethical and moral issue facing us is that the organization of our world is such that it guarantees that a large fraction of human beings will be the victims of the environment they were born into with little chance of rising above it. What we have to fight for primarily is the liberation of the gene; to give our genes a chance, these genes of all people everywhere that are held in strait- jackets that are primarily non-genetic. Is it not a matter of rather low priority to spend time and effort on the problems that concern a small segment of mankind, namely those with genetic defects? Lewontin (1971) chided those of his genetical colleagues whom he considered to be preoccupied with ethical problems arising out of the application of eugenics. 'We are told that if we can diagnose genetical disorders in utero, a serious ethical problem arises in the decision to deprive a possibly debilitated foetus of its right to life. In a more futuristic vein, we are asked to ponder the weighty ethical problem that arises if we could manipulate an individual's genes at birth or before, since we would be making a decision about a person's biological nature and the biological nature of future generations . . . What is seldom realized is that the preoccupation with individual moral issues such as these, however serious they may be, is the result of a class bias peculiar to scientists, academics and other middle class persons. For such privileged persons for whom personal freedom and choice are taken for granted, these individual interferences with liberty and destiny seem fraught with significance. But they are uttered blind to the fact that large groups of human beings are victims, by socially determined necessity, of scientific decisions and research priorities.' Lewontin was not arguing against genetic screening programmes that might alleviate suffering in black ghettos. He was arguing against an elitist concern about genetical manipulation and its ethical problems whilst ignoring the fact that, for a majority of the people in the world, social and political circumstances prevent them from having a chance in life. The social and ethical problems of our time are not primarily those caused by wrong genetics but by wrong social and political systems. That is a fact which is hardly disputable. It is of course extremely difficult to
The list of books you might like
