Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Daniel Wikler and Eileen Palmer,
Professor, Program in Medical Ethics, University of Wisconsin Medical School, USA
These issues deservedly receive most of the attention given by scholars writing on ethical issues in medical genetics, particularly in light of the rapid advances promised by the Human Genome Project. There are, however, a number of less concrete, more philosophical questions which are prompted by these same medical and scientific efforts. It is harder to state them clearly, and it may be impossible to answer or resolve them fully. Nevertheless, they color our attitudes and perceptions of medical genetics, whether we are scientists or members of the lay public, and therefore influence the social and political climate in which the scientific work is carried out. For this reason, it may be worth raising such questions in a forum devoted to the ethics of biological science, rather than confining them to the philosopher's study. In this paper we take up one of these background questions, the problematic relationship of medical genetics to eugenics, and consider it in light of a potential source of controversy over future applications of medical genetics.
"Eugenics", the name of a worldwide movement endorsed by humanitarian scientists and leaders in the early part of this century, has become a taboo word. It is a term used in accusations, and most of those at whom it is aimed run from it. In gatherings held to discuss ethical issues in genetics, the term "eugenics" can be used for historical reference, but it is unusual, perhaps even impolite, to use it to describe efforts currently underway or planned for the future.
Perhaps this is as it should be. The term "eugenics" will probably be associated forever with the criminal acts of the Nazi regime, whose nationalist and racist ideology was specifically cast in eugenic or genetic terms. As Muller-Hill (1988) and others have shown, what passed for genetic science under the "eugenics" label in Germany in the 1930s was not only used by the Nazis in support of their racist ideology, it may even have inspired Naziism to some degree. The notion of selective breeding in man to create individuals capable of more happiness and less distress was transformed by the Nazis into a program of "pure blood" in which the genetic contribution of entire peoples was denied, at first through laws restricting sexual contacts and later through outright murder.
Nazi eugenics stemmed from a racist current in the eugenic movement which was recognized as such by the more progressive eugenicists of the day; nevertheless, the extreme deformation of the eugenic program under the Nazis served to discredit even that segment of the worldwide eugenics movement which was anti-racist. Historians of science have shown that this effect was not entirely unfortunate. Even liberals among the eugenicists were insufficiently mindful of the human rights of those whom they viewed as genetically compromised, as evidenced in the hundreds of thousands of involuntary sterilizations of the mentally disabled, many in the United States some of these would be regarded as criminal today. Moreover, the eugenic program's proposals raced far ahead of the scientific basis that could be mustered for them, as contemporary critics pointed out. Moreover, a welcome humility has now become standard among medical geneticists. Genetic counselors, at least in the United States, typically view their role as information-sharing, permitting individuals to make their own reproductive decisions in light of the fullest possible understanding of the consequences. They do not clamor for authority to impose their choices on their patients; indeed, the prevailing ethic of the genetic counselors requires them, except in the case of the severest diseases, to present the genetic information as neutrally as possible as to avoid betraying their own sense of which decisions would be for the best.
Some of the bad reputation of eugenics, then, can be ascribed to "guilt by association" with its Nazi offshoot, but some of it is deserved. Some eugenics-minded authors were not racist or murderous. But too often they were unscientific, and some of the eugenicists could fairly be charged with "hubris" - or "Playing God" - in that they claimed authoritative insight into what kinds of human beings ought to populate the earth.
Modern medical genetics seems to avoid these pitfalls. Several of its leading voices have taken pains to dissociate genetics from any racist doctrine (Lewontin et al. 1983). Medical practices such as genetic counselling are closely tied to the developing knowledge base. And the counselor's neutrality, as we have mentioned, seems to steer around the sin of hubris.
These considerations support the current practice in discussions of ethical issues in medical genetics of avoiding reference to eugenics, except by way of contrast. Nevertheless, contemporary medical genetics does share with its two wayward cousins, Nazi eugenics and what might be called "nonracist" eugenics, something of the same goal, which is to improve the human condition by influencing the occurrences of certain genes and their phenotypic expression. Medical genetics has thus far avoided the failings and dangers of the eugenic movement. Its practitioners maintain that it is not based on pseudo-science; it does not require us to pretend to know what kinds of people there should be; and it does not threaten any group. While we accept these claims, we believe that the latter two are more difficult to defend than is usually admitted. We will argue that medical genetics does in certain ways have a eugenic goal; and that a group which feels threatened by medical eugenics is in the process of formation. Continued public support of medical genetics may require a debate over some of these issues.
Though it is difficult to find defenders of eugenics among responsible leaders of science, bioethics, and health policy, if we could abstract entirely from historical experience, it would not be immediately clear why this should be so. After all, the basic impulse is an humanitarian one. Science aims not only to satisfy curiosity but to better the lot of mankind. We hope that science will make the world more conducive to human happiness. But the same goal will be furthered by trying to ensure that those humans who inhabit the planet are capable of finding happiness and fulfilment in the world as they find it. Influencing the genetic pool might be a means to this end. The historic abuses of human rights which claimed eugenic inspiration leads us to assume that to act on this motive is to display hubris, to distort science, and ultimately to commit criminal acts; the idea in the abstract might be attractive.
Perhaps a cleaned-up eugenics would have a chance of winning adherents. But this is not how medical genetics presents itself in its bid for public support. It dissociates itself from genetics by hewing resolutely to the "medical model", i.e., by focusing entirely on a healing mission. Medical geneticists, this is to say, are not out to make superior people, but to combat disease; or even more modestly, to enable individuals to make informed choices in their personal decisions about reproduction. As such, their goals are no different from any other branch of medicine. One need not assume that one has God-like ability to determine what people should be like, as the eugenicists were alleged to do, except for the completely uncontroversial assumption that people do not wish to be diseased. By sticking closely to this medical model, it seems, medical genetics can avoid any eugenic tendencies.
This defense of medical genetics sounds plausible enough, if we focus on severe diseases which impair function and if we limit our attention to the individuals directly affected. Hemophilia and Huntington's chorea deserve the label "disease", and their eradication is certainly part of the traditional medical mission. Nevertheless, we argue that the non-eugenic motivation of medical genetics is less clear in other kinds of cases.
Inherited minor disfigurations are one example: they are unwanted, and perhaps stigmatizing, but do not impair function. Still, a parent might be given information by a doctor which would permit them to decide whether to risk passing on the unwanted family trait to the next generation. In the United States, a female television announcer in Los Angeles was recently criticized by many viewers for her decision to bear a child which would inherit her syndactylism. Moreover, the line between "normal variation" and "genetic disease" may in some cases be socially defined. If there turns out to be a set of genes responsible for homosexuality, or aggressiveness or shyness, those having the genes and the traits may be labelled as diseased in societies which are hostile to one or the other of these attributes, while in more accepting societies they will simply be viewed as "different". The same is true, of short stature, which is attaining the status of disease now that synthetic growth hormone offers the prospect of augmented height.
Thus the line between medical and the eugenic is not as distinct as one might suppose, and one must ask whether at least some of what does or will pass as medical genetics is not in fact a species of eugenics. We do not suggest that medical geneticists have a secret agenda, or that they are in any way insincere in denying eugenic motives. Clinical geneticists are trained in the same schools as other physicians and their tendency to see themselves as healers rather than as population engineers is understandable in light of the healing mission of their profession and its disease orientation. If we are right, however, the eugenic mission is alive not only in those few well-publicised upwellings of state-sponsored human engineering (Chee and Chan 1984), but in subtle forms in general medical genetics practice.
These modest observations in themselves show that the trace occurrence of eugenic motives in medical genetics present any particular problems when the clinician's focus is on the most serious, function-impairing diseases. But we do wish to raise this possibility. We will argue that medical genetics in the era of the Human Genome Project has the potential for being perceived as a eugenic program which threatens harm to a specific group of individuals. We will explore the logic of this perception, and will discuss briefly some possible responses.
The charge that medical genetics is a potentially threatening eugenic program begins with the observation that much of medical genetics aims to combat disease not by healing anyone but by preventing the conception or birth of afflicted individuals. It aims to bring about a world less in which fewer people suffer from hereditary diseases, but it accomplishes this by picking and choosing among the potential people who might be conceived and born - or, at least, enabling prospective parents to do so.
This statement of the aims of medical genetics has an air of paradox about it, as if we were supposing that children not yet conceived had interests and rights which were being violated. Our description does not broach this absurdity, however a reproductive choice which avoids the conception of a child at high risk of hereditary disability does not harm the child who would have to come to be, as if the child had held confirmed reservations for beings conceived and were unjustly denied boarding rights. That child's existence is existence only as an idea, which is to say not existence at all, and the decision not to conceive "him" is not directed at any real individual.
There is a group of quite real individuals, however, who might feel targeted. These are the people who have the hereditary condition whose prospect caused the prospective parents to avoid conceiving a child who would have been at risk. For these individuals, a decision by prospective parents not to take that risk may be perceived as a judgement on the prospective parents' part that the prospect of having a child with that trait is undesirable - undesirable enough to motivate them to take steps to ensure that such a child will not be conceived. The clinician who assists them in this choice may profess neutrality, leaving the decision entirely up to the prospective parents. But in choosing information about this risk to provide to the prospective parents, the clinician also participates in the judgement that prospective parents may wish to think carefully before bringing such children into the world. It does not matter that these "messages" may be unintended, or that the prospective parent or the physician may say that they disagree with them. Some messages can be received even if they are not sent.
What conclusions might those who have these conditions draw from these perceived messages? And in particular, could these reasonably be likened to the hateful messages which were deliberately sent by the racist eugenicists of the 1930's? One might suppose that the answer is certainly no. In those days, entire peoples were targeted for extinction. In medical genetics, no animus is intended toward any group. For one thing, the state professes neutrality on these issues, since the decision is left up to the individual prospective parent. And the judgement made by the prospective parent is that a life without the inherited disease is better, everything else being equal, than a life afflicted with it - not that people with that disease are undesirable, or that the disabled have no place in our society.
Those who are afflicted, however, may feel differently. There are increasing signs, in the United States and Western Europe at least, that some disabled people increasingly identify themselves as a social group. Some "groups" are nominal only: we can group people any way we wish - by height, by hair color, or any other characteristic - but the "group" to which we refer has no existence apart from our act of referring. Other groups are real: the people involved perceive themselves as belonging to the group, and feel a kinship with the other group members. In particular, they may take pride in the accomplishments of other members of the group, even if they do not know them, and they may feel personally slighted when disparaging references are made to the group as a whole, even if they are not personally singled out. This group identity may be reinforced by the attitudes of others, who treat these individuals as little more than representatives of the group's stereotyped characteristics. The disabled are beginning to see themselves as a real group there is a strong disability-rights movement, with political influence, there are leaders, and newsletters, and even radical and conservative factions.
Two projects of the disability rights movement are relatively concrete. Much of the political program of the disability rights movement is straightforward: for example, better care for the disabled, and the lowering of barriers to access to normal life. Here the common interest of the disabled is evident, and the political organising has paid off.
Along with this interest-group pressure has been a simultaneous effort to change perceptions of the disabled. Advocates for the disabled have urged, for example, that television programs show actors who seem ordinary in most ways but who may be blind or who utilize a wheelchair. The point is to combat the tendency to see the disabled person primarily in light of his or her disability, thus falsely emphasizing differences between the disabled person and others.
For medical genetics, a third project of the disability rights movement is of particular importance. It amounts to an ideological challenge, and it is mounted by the movement's most assertive, radical wing. The challenge is to the very notion of disability, the nearly-universal tendency to assume that the conditions called disabilities are inherently undesirable and that those who have then are burdened by afflictions. This position is difficult to state without caricature, and it is seldom argued in such plain terms. Nevertheless, we argue that this theme may come to be understood as implying that medical genetics in some instances partakes in some of the evils of the old eugenics, and that there could come to be some organized opposition on the parts of disability rights advocates. For this among other reasons, it is important to be attentive to this theme, even when it is an undertone rather than an explicit argument, and to begin to fashion a response.
The radical disability-rights argument takes several forms. One development proceeds by pointing out that a particular characteristic is only disabling in environments which make the characteristic a barrier to function. Thus mild myopia is no problem at all to drivers if the letters on road signs are big enough, and no problem to those who walk if pedestrian crossing signals are large and bright, whereas the condition might be disabling, or at least disorienting, if the signs were made with only the normally-sighted in mind. Similarly, general intelligence somewhat below average may not be noteworthy on the farm but can lead to ruin in the big city. It is a matter of distributive justice that we do or do not invest in easy-to-read road signs, and other accommodations to the range of abilities; and so the very designation of some physical and mental conditions as disabilities is a measure of the justice prevailing in society.
A second argument challenging the status of disability as an affliction is that people with disabilities can have lives every bit as fulfilling as others' lives are; in this view, people differ in their talents and abilities, but in many cases it is not justified to think of those lacking certain abilities as a "disabled person". Consider a family of musicians, and a child born in that family who cannot carry a tune and has no musical ability or insight at all. This person is "disabled" relative to the other family members in this respect, but it is not a disabled person - and in so saying, we signal our belief that this person's life is just as likely to be rich and fulfilled as the others' lives will be, though the fulfilment will not come through music. Another way of putting this point is that fulfilment through music is but one path to happiness, and though it is better to be musical than not, everything else being equal, unmusical people are not "disabled" or "handicapped". The point of the radical disability rights critique is that even major disabilities, such as blindness, can under more just social conditions be merely one item in a very large inventory of life circumstances in which an individual might find himself; it is unfair to these people both to fail to create circumstances which minimize the burden of the disability and also to exaggerate the importance of the condition so much that it means that the person is thought of by others primarily in reference to the disability.
Thus the radical critique of medical genetics may be that in targeting inherited diseases and disabilities for elimination through informed reproduction, clinicians contribute to a social process whose outcome is the injustice these disability rights advocates protests. Rather than prevent the birth of these kinds of people, they argue, we should change our attitudes about them, accepting them as equals and as essentially unremarkable. By helping prospective parents to avoid the conception of children at risk of hereditary illness and disability, according to this critique, we are simultaneously evincing regret that those born with the traits slipped through the net, i.e., that they exist at all. And this attitude, again according to the disability rights critique, is not only unfounded, but in practice harmful to our fellow-citizens who have these traits.
What should we think of this argument? It might, at first glance, be difficult for many to understand, let alone accept. The critique seems to say that a lame or blind person, everything else being equal, is no worse off than one who is not lame or blind. If this were true, there would be little reason to try to restore the ability to walk and see, and medicine would have little point. The fact that everyone would rather have no disability, it might seem, is adequate refutation of this radical view.
But this rejection, we believe, is too hasty. The critique does not necessarily deny that hereditary diseases are undesirable (it claims that the disease is undesirable, the person with the disease is not). Instead, it questions the importance we attached to them, at least to the less terrible ones. The critique affirms the ability of people with disabilities to have fully satisfactory lives, and asks why we would strive so hard to prevent them from coming into being.
We offer a counter-argument which is, we believe, more sympathetic, though it is rather abstract. In our view, the prospective parent is in a quite different context of moral choice than the parent of an actual child. At the time of the reproductive decision, no child exists. The parents imagine such a child, but any feelings they may have are directed toward these imaginings rather than toward any actual individual. The genetic counselor holds out two prospects: one realizing the idea of a healthy child, one realizing the idea of a disease one. When the issue is put entirely in terms of a choice between these imagined children, whose "existence" lies only in a list of attributes, the parents may opt for the healthier one. After a reproductive decision is made and a child comes into our lives, we have affective ties not to mere abstractions but to flesh-and-blood offspring. To love an individual is much more than having a positive attitude toward some or all of that person's attributes. Our relationship is to the person, the bearer of the attributes, and, especially with children., we will love that person whichever attributes he or she has or will come to have. If the child becomes ill, or turns out to be born with a disease, we will wish the best for them, but as we do so we still love this child as an individual. Before the child comes into being, we favor one list of attributes - the healthier ones - over another, if we get to make that choice. This is quite common. But it is unusual to find a parent who wishes that some other parent's child were his, even though each of us knows children in other families who are superior in some respect or other to our won. Thus before the fact we hope for a healthy child, but after the fact we do not regret having the children we do, as opposed to other, healthier ones. In our view, there is no inconsistency in this.
Thus participation in medical genetics, either as clinician or as patient, need not signal any negative attitude toward those with hereditary diseases, whether they be one's own children or those of other parents. At no point does one wish that the diseased child had not been born, nor that a healthy child had been born in their stead. And social policies which offered reproductive choices to parents need not in themselves be in any way degrading to those who suffer from these diseases, providing that the society was in other respects respectful and fair to the disabled.
Our counter-argument is intended to show that a desire to conceive a healthy child does not entail any regret over conceiving an unhealthy one. Is thus an adequate response to the radical disability-rights critique? Even if its logic is sound, what matters in social and political terms are the perceptions and feelings which these issues evoke. We would not expect a philosophers' argument to head off a social movement. To the extent that the disability rights movement succeeds in creating group identity and self-consciousness among the disabled, these perceptions may generate a political atmosphere hostile to some of the projects of medical genetics.
It is too early to say whether this political question is merely hypothetical or will become significant. One sign which suggests that this kind of thinking may be taking hold is the view reportedly held by some advocates for children with cystic fibrosis (CF), which is that as the projected lifespans of CF patients approaches the fourth decade, we stop thinking of prevention of CF through genetic counseling and concentrate instead on ameliorative treatment. This may be merely a recommendation about how limited financial resources should be invested; but it might instead reflect the view we have discussed here, i.e., that a life with CF has become close to a normal life, and that continued emphasis on preventing the conception of children with CF pronounces society's displeasure in the very existence of those with the disease.
Perhaps the strongest evidence that the radical disability rights critique could create an atmosphere hostile to the aims of medical genetics has come in a series of recent events in German-speaking Europe involving the Australian philosopher Peter Singer. Several of his appearances before academic audiences were interrupted by loud protesters who shouted him down and in two cases prevented conferences from taking place. Singer was taken to account for writing sympathetically of the plight of parents told that their newborns were defective; in view of the protesters, Singer was endorsing the idea that the disabled had no right to live and that society would be better off without them. In one protest, Singer's planned talk was drowned out by the noise made by large numbers of protesters in wheel chairs, who acted as if their very lives were being threatened. These protests were mounted by a coalition of leftists, Greens, disability-rights protesters, and right-to-life activists; the very conjunction of this exceedingly diverse group suggests that the radical argument we have been discussing here could potentially have wide appeal.
Perhaps this is, and will remain, a fringe phenomenon. We do not have survey evidence to offer and so cannot estimate its extent. But we offer our observations as a early posting of ideological developments within an increasingly vocal and influential disability rights movement, one which seems to be in keeping with widespread hostile feelings toward medical genetics in Germany and its environs and which could easily become part of the thinking of a number of groups elsewhere.
While we fault the critique on logical grounds for the reasons given above, we are of course sympathetic to its plea for social reforms which ameliorate the isolation and stigmatization of the disabled. While uncritical adoption of the critique in its most radical form might put medical genetics in some peril in terms of popular support, and therefore should be responded to, it would likewise be wrong to react unsympathetically. The radical disability rights critique points to the diffuse, difficult-to-measure social effects of medical acts, which are initiated by and on behalf of individuals. The effects of these acts transcend even national boundaries; and since both medical genetics and the disability rights movement are fully international, it is also appropriate that this debate be carried on in international symposia such as ours.
Chee Heng Leng & Chan Chee Khoon, Designer Genes: I.Q., Ideology & Biology (Selangor, Malaysia: Institute for Social Analysis 1984).
Lewontin, R.C., Rose, S. & Kamin, L.J., Not in Our Genes: Biology, Ideology, and Human Nature (New York: Pantheon Books 1983).
Muller-Hill, Benno, Murderous Science (Oxford University Press 1988).
The authors acknowledge with thanks the constructive criticism of Alta Charo, Norman Fost, M.D., and Alan Weisbard, J.D.