pp. 245-248 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
7.2. Ethical Issues in Genetics in the Next 100 Years
University of Pennsylvania Center for Bioethics, USA
There is more than enough ethical quandary in genetic technology today to keep physicians and bioethicists confused. The majority of families in the West and around the world are unaware how far routine and exotic genetics have advanced, and are caught off guard by each new technology. At the same time, in the United States studies show that most scientists receive virtually no training in ethics, physicians receive almost no training in genetics, and less than 16% of those who receive genetic tests for susceptibility to cancer are counseled about their test in any serious way. The first time most families in the West learn about the practical issues in genetic testing is when a friend or relative needs a test urgently during pregnancy. To make matters worse, apart from bioethics conferences there is still virtually no common public or scientific international conversation about gene therapy, reproductive rights, or genetic patenting. You might think it is a bad time to look ahead 100 years. After all, there is more than enough work to do right now: bioethics must be folded into the high school curriculum. Genetics education must be required for every physician, ethics training for every young scientist, and reproductive issues training should be given to every minister and politician. Journalists also must learn more science, including developmental rather than merely molecular genetics. These are issues for today. With our attention focused on new technologies emerging monthly (cloned sheep, frozen eggs, headless frog embryos) we seldom take the time to accomplish these priorities. Bioethics is growing quickly but it is unlikely to catch up with such science. In such a world it is difficult to spend time forecasting or critiquing future utopias.
However, if the problems of today and the need to remember historical atrocities in genetics are important, it is just as critical to plan ahead. The next 100 years will see changes more dramatic than the 20th century, which saw the creation of molecular genetics, the rise and fall of eugenics, and the human genome project. It is time, I believe, to use some imagination to think about what might come to be in the world of genetics in the next 100 years. Only by looking at the possibilities can we see the need to confront some basic dilemmas posed by genetic medicine and science. Some areas of genetic medicine, such as simple genetic explanation of diseases and traits, will fall away in the next few years. Genetic diagnosis and gene therapy will become more and more effective as partners to environmentally and nutritionally based medicine and pharmacology. And the costs of genetic services will fall precipitously just as evidence accumulates about the cost of life with disease-related genes. Virtually every culture will have to cope with an unparalleled pressure to conserve social resources by applying pressure to individuals in an attempt to modify their reproductive behavior and other life choices.
One very important role of bioethics is to think about how allocation of resources, crafting of laws, and education of children and professionals should be used to prepare for such a future. Bioethics can be ginstitutional criticism,h examining how the establishment and maintenance of different institutions puts each society in a position to cope with issues in health and science. However, history is a very poor guide in this regard. Bioethics as a discipline is scarcely 40 years old, and American bioethics has grown out of reactions to big scandals, such as Nuremberg, Tuskegee, Henry Beecherfs study of abuses in research, Baby Doe, and the transplantation of animal parts into humans. Bioethics knows how to cope with Dolly the cloned sheep. It is not so great at predicting or laying the ground for new science. It is clear from the public reactions to Dolly, and other recent scientific claims in the areas of developmental and molecular genetics, that bioethics has not done much to improve the potential for sustained conversation about genetics. Americans seem interested and repelled by the latest, the most interesting news about genetics, but utterly uninterested in debate about genetic determinism or public health genetics. Faced with this need to concentrate on the issues of the day, bioethics of 1997 remains for the most part a journalism-driven enterprise, and its potential role as institutional critic is often left unfilled. The danger is that when scandals pass, if the publicfs fear is uneducated, fear is soon replaced by uncritical acceptance of the new technology. Without reconstruction of the institutions of society to meet new challenges, there is little chance we will be prepared for the innovations that are coming.
I will describe three areas of change that seem to be approaching in the next 100 years. For each of the three waves of coming change in genetics, I have thus concentrated on the kind of institutional weakness--and thus the kind of opportunity for reform--that is present.
First, I think it is easy to imagine a world 100 years from now in which parents have much more control over the inheritance of future children. Gene therapy and pre-implantation diagnosis for 6-8 cell embryos will be thoroughly assimilated into obstetrics technologies. All that remains for such technologies to be assimilated is a few small technological advances. First scientists must improve the ability, and reduce the cost, of successful in vitro fertilization. Second, in vitro fertilization will be made more intimate, more thoroughly integrated with sexual reproduction. Couples who are not infertile will be reluctant to use pre-implantation diagnosis until it is integrated with sex. Infertility treatments today are in the dark ages in this regard. IVF is difficult, painful, risky, expensive, and culturally stigmatized. But advances are likely. Think of this century. The birth control pill revolutionized sex by making it possible to have sexual relations without having children. The pill thus increased the control couples and individuals have over pregnancy. In the next 50 years pre-implantation diagnosis and infertility treatment will advance from a clinical and impersonal process to something more realistically sexual in nature. Whether it is a pill, a method for extracting the products of sexual relations, or a non-invasive mode of in-vivo gene therapy, there will be a way to integrate genetic diagnosis with other more ordinary reproductive activities. Todayfs public fears of genetic diagnosis assume that it use of such technologies will be alien, impersonal, and technologically difficult. But these fears can be allayed. At that point there will be widespread calls for the use of early embryo diagnosis. Couples who are not infertile will begin using diagnostic processes to sort embryos for desired characteristics.
How much should parents be able to use such technologies to design their offspring? What are the moral objections to design of offspring that are most useful in initiating public conversation? In my research, I look closely at the debate about use of reproductive genetics. This matter is highly politicized. One the one side there is enormous emphasis on the grightsh of individuals. A large number of my colleagues around the United States hold that we need to deal with prenatal diagnosis in the way that we deal with all matters of pregnancy, that is, in terms of the need to preserve the rights of women to choose about their desired outcome. In the US this trend began with Court decisions in this century about abortion, which emphasized the importance of allowing parents to choose to be parents. The present US and European policies allowing infertile and fertile couples to do as much as they like with genetic testing are rooted in reproductive rights.
Others disagree. The countervailing trend in global law is toward thinking of pregnancy in terms of the health of the fetus. This century has seen increasing technological advances around pregnancy, prenatal care, and neonatal intensive care. Pediatric care of young children has similarly advanced dramatically, so that in the 20th century a physician can define the gnormalh child in terms of some more or less limited body of epidemiological data about whether a particular child has traits that are typical of the last 100,000 or so children seen by physicians. The idea that parents have a responsibility to make sure that their fetus has the opportunity to flourish is an old one, but new technologies have made that responsibility more tangible. Today a pregnant woman who wants to give birth will be strongly encouraged to seek prenatal care and to eat a particular diet. The law in many nations makes parenthood revocable for cases of neglect or abuse. Tomorrow we will likely see outright pressure or even requirements that parents think of their offspring as having a right to flourish.
How much do we want to allow or encourage parents to think of the making of babies as a process of gmakingh rather than ghaving?h I have argued in my work that research shows that children who are the product of high-technology pregnancies and neonatal care are more likely to think of their lives in different ways. The clone will be a different person. But how different? What will it feel like to be born as a child of this new era? I believe that there are opportunities to think about this future that steer a path between the simple rights of mothers on the one hand, and the mandates of prenatal care on the other. Debate about new reproductive technology so far has focused on laws that would ban particular technologies like cloning. It is time to draw on other social metaphors. The one area where there is widespread consensus about how unorthodox pregnancy should be handled is the area of adoption. Adoptive parents are required to show that they are capable of helping their children overcome what is otherwise a strange new relationship. We should think about using similar means to think about how new reproductive choice may be achieved, rather than working on accomplishing the hopeless task of reconciling universal notions about fetal rights with abstract accounts of autonomy. Reproductive rights do not entitle parents to take wanton risks with their children, but to prevent this we need to create conversations instead of banning progress. New genetic manipulation can be an important tool for parenting, but its responsible implementation depends on assessing the motives of particular parents in the same way that we assess the motives of couples who would adopt. Not every 63 year-old will be a good mother. Most parents would have trouble raising a clone. The key of course is education to enhance the publicfs interest in and ability to apply their conventional standards about childrensf rights to these new technologies.
The second element of our genetic future is public health use of genetic testing. The future is likely to involve some public pressures on adults and institutions to avoid passing on some alleles. The pressure in the next 20 years may come from insurers, but in the long term there will be comprehensive practice guidelines in medicine, embodied by various World Health organizations, that could lead to national and regional policies. These policies will make it difficult to pass on genes that are particularly lethal. There are many fears about such a future. What is a "healthy" public? How are we to draw a line between responsible stewardship of the future on the one side, and dangerous abuses of the power of creation on the other? I want to comment on only one aspect of this issue, namely the relationship between public health genetics and eugenics.
Leaders and societies have historically committed atrocity in the name of plans to improve the publicfs genetic inheritance. In Western political and philosophical history, from Plato to Aristotle to Hobbes, our deepest ideas about human nature have been rooted in crude, non-molecular accounts of human heredity, many of which have been used to explain or fortify education, health, and political practice. Some of the most significant ethical mistakes of our lifetimes have been made by those acting in the name of purifying public health or ghygiene.h Eugenics was taught as scientific fact in the worldfs finest universities until 1945, sanctioned in global court decisions, and led to the sterilization in the 1920s and 1930s of more that 20,000 in the US, 45,000 in the UK and 250,000 in Germany.
Eugenics turned public opinion against public control of reproductive choices or communal control over what kind of children will be born. However, in fighting against eugenics, we have only one, highly ineffective safeguard, so-called gnon-directiveh genetic counseling. Most genetic professionals either take an oath or learn in other ways that it is wrong to attempt to persuade families about genetic choices. It is a worthy ideal. However, not only has the ideology of non-directive counseling been ineffective in preventing directiveness (as study by Wertz and Fletcher suggests), it has completely ignored the role of economics in pressuring families and the social context of genetic testing. If the genetic counselor is available only for families who can pay for the testing, such counseling is by definition directive, namely directed at helping those who can pay. Likewise, how are genetic counselors to protect us from eugenics in a future where state-sponsored genetic screening seems unavoidable? A genetic counselor cannot be non-directive about a test if the test is mandated. The genetic counseling role is likely to expand in importance. However, the chief sin to be avoided is not directiveness but rather inappropriate pressure.
None believe that we will return to the sterilization practices of eugenics. But public sponsored genetic testing programs will make it likely that more parents will use genetic tests as a part of planning for birth. The public in many nations will begin to pressure families to avoid births where discrete genes can be identified as disease-related. How is the public to be defined for such a purpose? Who will choose which traits to include in screening efforts?
Before we can answer such questions there must be a comprehensive global public health effort to regulate the spread of genetic testing, and in particular an effort to establish global cooperation in assessing the efficacy of genetic tests and the relationship between particular genes and environments. There must also be a new emphasis on retraining journalists, politicians, and ministers about genetics so that genetic testing will not always result in hysteria about eugenics. The debate about eugenics is not helpful in thinking about genetic testing, and in fact has resulted in the development of institutions that hardly protect us from anything, least of all eugenics. Careful, cautious progress into the future of genetic public health depends on the establishment of new institutions whose task is to link environmental, genetic, and policy information. We must make sure that there are counselors, but more important we must ensure that the conceptual resources of genetic counseling are also present in leadership of all kinds. Families must be able to turn to someone, even if only a minister, to interpret and cope with the new issues. These professionals will be directive, reflecting the culture and meaning of their professions and societies. However they must bring concern for the family and individual liberty to the table as well.
The third issue for the future is perhaps the most difficult one. It is clear that the maldistribution of public resources in health care cannot continue in the USA and other countries. We spend billions on genetic research and refuse to spend pennies on public health for pregnant women. We spend millions on genetic research concerning intelligence, but find ourselves unable to spend pennies to educate the worldfs children--including educating them about genetics. This is dangerous because it suggests that we hope for a future in which nutrition, education and environmental issues are sublimated to genetics or genomics.
Perhaps the key and overriding institutional issue in the future of human genetic science and medicine has to do with what we might call ggenetic essentialism.h To allow the mapping of a human genome to occur quickly and auspiciously, several governments created special programs for molecular mapping and sequencing. To allow gene therapy to be separately examined, at least two countries created special regulatory bodies. In the US., more than 10 states have laws prohibiting genetic discrimination, but not non-genetic discrimination. These programs and others create the idea that genetics is exceptional, different, and meriting its own category of analysis and regulation.
At times genetic issues are exceptional. Genetic predictive information is different than cholesterol testing. Giving a child gene therapy in the germ line is different from giving her insulin. But in general, the result of thinking about genetics by itself, rather than in the context of other similar technologies, has been excessive spending on gene research while public health goes unfunded. And in no small part, genetic exceptionalism has also licensed hyperbole about gholy grailsh and gunlocking the key to life,h language that is not only misleading but also damaging to public understanding. My final suggestion is thus that in a future where public health genetics, parenting by genetic test, and new reproductive technologies are part of our life, we must reconstitute our social institutions so that it is possible to fund, discuss, and regulate genetics in the same way we think about its competitors: environmental medicine, nutrition, and public health. We must learn our lessons not from a new ggen-ethics,h but from the wisdom of generations applied by analogy.
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