H U M A N G E N E THERAPY 2:229-233 (1991) Mary Ann Liebert, Inc., Publishers
Selective A b o r t i o n a n d G e n e T h e r a p y : Reflections on H u m a n
STEPHEN G. POST
ABSTRACT The potential impact of the Human Genome Project on selective abortion is considered here, as is human gene therapy. T h e m e s of e m p h a s i s are broadly humanistic: h u m a n suffering, contingency, a n d perfection. T h e chief concerns of the article lie with selective abortion for less than serious reasons, a n d with the importance of avoiding efforts to " e n h a n c e " h u m a n beings b y gene transfer m e t h o d s . T h e style is widely interdisciplinary.
OVERVIEW S U M M A R Y Abortion, the Human Genome Project, and human gene therapy are each topics that have elicited considerable moral reflection. Post attempts to examine h o w these three areas are interrelated and h o w the existence of these interrelationships have an influence on the moral discussions.
T H E PROJECT to m a p and sequence the human genome will dramatically increase the number of gene abnormalities that can be tested for from several hundred to many more within the decade, and perhaps eventually to thousands/1} Prenatal, neonatal, carrier, and presymptomatic screening will reach new orders of magnitude.(2) This article focuses on the broad humanistic foundations of the choices that individuals will be making about selective abortion on the basis of genetic defects; it then extends this focus to the moral aspects of the distinction between gene therapy and enhancement. It must be immediately stated, lest this article be misinterpreted, that the H u m a n G e n o m e Project should not be frowned on for reason of opposition to abortion. The emerging technology of somatic cell gene therapy will provide an alternative for parents w h o might otherwise resort to selective abortion. Eve K. Nichols suggests a scenario in which prenatal diagnosis detects severe combined i m m u n e deficiency (SCID). Knowing of the disease in advance, physicians could prepare a germ-free "bub-
ble" environment for the baby. Then, the adenosine deaminase ( A D A ) gene could be inserted into the baby's bone marrow cells, which then would be returned to the baby. This autologous transplant would result in normal lymphocytes, and in a healthy child.(3) Scenarios such as this indicate that the genome project should not be captured by the politics of abortion, as has occurred with fetal tissue transplant.(4) M a n y severe and earlyonset disease for which selective abortion would n o w be morally justified may be treatable through gene transfer in future decades. It is very likely that human gene therapy will make selective abortions less necessary.
SEVERITY, PROBABILITY, A N D A G E OF ONSET Although selective abortion is an old topic, the Human G e n o m e Project and gene therapy raise it in a newly important way. Most Americans accept prenatal diagnosis and subsequent abortion for grave or relatively serious genetic defects that will manifest early in the sufferer's life, but are critical of termination of pregnancy for trivial or moderately serious genetic indications, and for indications that will manifest only later in life.(5) This is not to suggest that a public policy permitting selective abortions for any reason whatsoever is criticized. Even on the premise that there is a basic right to elective abortion, of which the right to selective abortion is a subset, there is nevertheless room to discuss the moral underpinnings of the choices that w o m e n are free to make. I a m chiefly concerned with selective
Departments of Philosophy and Religion, Center for Biomedical Ethics, Case Western Reserve University School of Medicine, Cleveland, O H 44106-4901.
abortions for less severe, and mid- or late-onset diseases. immediately or even directly affected in the w a y they would be Though largely a potential problem at present, there is wisdom were the disease of early onset. in an old Jewish aphorism, "Start worrying, letter to follow!" I do not want to go very far in resolving the balance between Largely potential, but not entirely so. Feminist Barbara Katz severity, probability, and age of onset that might justify selecRothman provides a number of case studies in which abortion tive abortion. Rather, I offer several humanistic reflections to was chosen as an alternative to mild diseases and less than provide a general background for such decisions, and that disabling impairments. She suggests a future in which w e will together justify reservations about abortions for diseases of late see vwa rise in the standards of production for children" that onset, such as Huntington's or possibly familial Alzheimer's. emerges from n e w technologies. "Will we," she asks, "establish M y limited intention is to c o m m e n t on American culture, a set of norms of acceptability, and then narrow, and narrow, focusing on three themes: the parental desire to avoid bringing and narrow yet again those norms?"(6) suffering into the world; the contingencies of the h u m a n condiIn response to this potential problem, Dorothy C. W e t z and tion; and the moral ambiguity of the quest for "perfect" babies. John C. Fletcher, supporters of the genome initiative, argue that These themes will be linked to both selective abortion and, more the medical profession should abandon a position of ethical briefly, to gene therapy. neutrality with regard to prenatal sex selection, partly because this sets precedents for selective abortions unrelated to disease or disability, e.g., eye and hair color, thinness, skin color, straight SUFFERING, CONTINGENCY, A N D teeth, and other "cosmetic" considerations.(7) Within a decade PERFECTION or two, they continue, these "exotic" choices will be technically possible, especially relating to body size and height. The suffering of offspring Prenatal testing will eventually be capable of detecting hundreds or thousands of single gene defects, many more polygenic Parents rightfully prefer not to bring lives filled with suffering and multifactorial defects, and numerous superficial characterinto the world. Few, if any, would quarrel with the assumption istics of aesthetic concern. Pregnant w o m e n , at about 8 to 10 that it is preferable to have healthy children w h o are not born into weeks gestation, m a y be able to have a blood test indicating the physical pain. W h e n prenatal diagnosis reveals a grave defect D N A profile of the fetus based on fetal cells in the maternal that makes life an onerous burden of suffering, nonmaleficence circulation. This extensive n e w level of knowledge leads to warrants abortion. But it is wrong to assume that suffering is the tremendously complex personal choices about what lives are necessary result of genetic defect, or that lives with degrees of worth living, qualitatively considered.(8) That w o m e n have the physical suffering cannot be creative and meaningful. right to choose abortion is widely accepted in American culture, Fyodor Dostoyevsky, for instance, suffered from seizure but the discussion only begins here respecting personal moral disorder. In a letter to the famous critic Nikolai Strakhov, he conscience in the throes of decision. wrote these remarkable words: "For a few moments before the In the absence of an obviously grave and immediately threatfit, I experience a feeling of happiness such as it is quite ening defect, vexing decisions will be m a d e based on severity, impossible to imagine in a normal state and which other people probability, and age of onset of disease or disability. Turner's have no idea of. I feel entirely in harmony with myself and the syndrome, for instance, affects girls, resulting in shortness, whole world, and this feeling is so strong and so delightful that infertility, and laterally displaced nipples. However, it is neither for a few seconds of such bliss one would gladly give up ten life threatening, nor does it result in a shortened life span. years of one's life, if not one's whole life."(14) This passage is Probability of occurrence is clear, as is age of onset, but the almost outlandish, but it powerfully indicates that there can be severity of the syndrome might not be considered great. Another less suffering present in the experience of an illness than might example would be adult-onset polycystic kidney disease, which be supposed. may or m a y not occur, and which results in progressive renal O n feminist advocate ofrightsfor disabled persons points out failure during the adult years/9,10) It is treatable by dialysis or that as prenatal diagnosis results in vast n e w genetic knowledge, transplant. In this case, moderate severity combines with uncer- w o m e n need "to obtain far more and very different information tainty of manifestation and late onset. Huntington's disease can than they very commonly get about people with disabilities."(15) be distinguished from adult-onset polycystic kidney disease The notion that all disabilities cause suffering is conceptually because it is m u c h more severe, and untreatable.(11) Would an flawed. In m a n y cases, negative stereotypes obscure the creative abortion be morally justifiable for a fetus if the future child has a ways in which people with disabilities cope with different 2 0 % probability of bipolar affective disorder?(12) W h a t about challenges and needs. cystic fibrosis (CF), Duchenne's muscular dystrophy, blindThe H u m a n G e n o m e Project calls for scrutiny of the assumpness, or familial Alzheimer's disease?(13) W h a t shall w e do with tion that those w h o are different necessarily suffer. With our the freedom to decide, especially when genetic conditions have societal inclination to rather rigid standards of beauty and variable expression from mild to serious, variable likelihood of physical prowess, self-reliance and productivity, it is too easily manifestation, and variable age of onset? assumed that those w h o fall short of these standards therefore At a minimum, w e can distinguish moral from aesthetic suffer. Compassionate discrimination, which makes the experivalues, and give priority to the former. A disease such as ence of genetic impairments out to be worse than it is, should be Huntington's m a y be insufficient grounds for selective abortion avoided/16) because, even though it is clearly very severe, the eventual With respect to h u m a n gene therapy, the principle of benefisufferer nevertheless will have m a n y decades of good and cence provides sufficient moral justification "to use somatic cell unimpaired living. Moreover, the parents of the child are not gene therapy for treatment of serious disease."(17) So long as
SELECTIVE ABORTION AND GENE THERAPY gene therapy is limited to inherited disorders that result from the absence of a gene products, no one would reasonably object to it. The analogy is to organ transplantation, except on the cellular level. Although currently beyond the domain of scientific possibility, it is nevertheless imperative to consider the possibility that our cultural definitions of normalcy might shift so that enhancement genetic engineering becomes increasingly attractive. The therapeutic repair of human beings is noble, but efforts to enhance the already healthy are inherently problematic. W h a t defines enhancement? Are taller or more slender people better? A n d where would the endless so-called enhancement end? B y analogy, if the wider public questions abortion for trivial or cosmetic reasons, so also it is willing to question enhancement. Serious and objective medical need, rather than the vicissitudes of enhancement, are the proper basis for genetic interventions. The possibility for a confusion between mere h u m a n wants, and genuine human needs, is always real. A parent m a y want a "designer" child via gene enhancement, but this is not something that parent or child needs. The desire to eliminate disease and the sufferings that m a y be associated with illness is morally valid. However, the definition of suffering is wrongly expanded to include the ways in which an individual is different from others, though fully healthy. Suffering becomes a social construct imposed on us, so that parents will petition the physician to "enhance" a child regardless of the onerous imposition on the "patient" and the folly of the request. It is incumbent on physicians to hold firmly against the quest for enhancement, in part by maintaining a disease-based definition of the h u m a n suffering for which medical therapy is responsible. T o widen the definition of suffering so as to provide enhancement interventions is precisely the wrong response to the human condition. Moreover, such interventions violate the purpose of the healing art, which is the restoration of physical and mental function when possible.(18) Contingency Contingency refers to a chance or possible event. Our desire not to bring suffering into the world must be tempered by a recognition that suffering is a part of life, and escapes human prevention to a large degree. Those w h o are genotypically and phenotypically more "perfect" than others can lead tragic lives, however m u c h w e try to prevent this. Take the case of the great French artist henri de Toulouse-Lautrec. A descendent of aristocrats, he was the victim of two accidents that broke his legs and left him incurably disabled. His torso developed, but not his legs, and he became deformed, unable to walk without a cane. H e derived some consolation from painting, until dipsomania led to the asylum. His was an irregular life, one of immense suffering; it was also one of creative compensation and the development of the artistic poster as w e k n o w it today. Lautrec was born a normal infant, for all intents and purposes a perfect baby. But the contingencies of human experience that range from accident to bad luck left him disabled anyway, and suffering from a diminutive stature.The diminution both sadly befell and simultaneously m a y have elevated him artistically/19) although it is erroneous to suggest that disabilities generally giveriseto unusual forms of creativity as a compensatory response. A s for the effort to remove contingency from human experience, technological culture encourages ever greater control over
what was once left to chance or mystery. W e hear more of "wrongful life" suits pressed by those w h o feel that their imperfections should have been prevented. A n ancient Taoist text, about the old m a n and the horse, is instructive as counterpoint. There was an old m a n w h o had a horse, the story goes. O n e day the horse ran away. The neighbors came and said "Old man, old man, h o w unfortunate." H e responded, " H o w do you know?" The next day, the horse returned with two other wild horses beside it. The neighbors said, "Old man, old man, h o w fortunate." " H o w do you know?" he answered. His beloved son went riding on one of the n e w stallions, and was badly thrown, breaking his leg. The neighbors said, "Old m a n , old man, h o w unfortunate." H e responded, " H o w do you know?" At that time, as it turned out, many young m e n were being drafted into a work force to build the great wall of China. Most of them died. The old man's son was too crippled to go. The neighbors said, "Old man, old man, h o w fortunate." His only answer was, " H o w do you know?" This story expresses the extent to which w e cannot control all human events, nor easily predict what joys or sufferings will flow from them. The classical pre-scientific western culture left events largely in the hands of a mysterious deity whose ultimate purposes were presumed loving. Does technology foster a rage to control, and prevent our coming to grips with the basic existential reality of contingency from which w e never fully escape? N o matter h o w m u c h w e attempt control, suffering is a part of all human lives, to greater or lesser degrees/20) The Tantric Buddhist will state that if you are born, you will suffer; life is understood as suffering unto growth, until the wheel of rebirth is finally escaped. Indeed, transformative suffering is viewed as the only point of human bodily existence. Enhancement genetic engineering m a y be attractive in a culture that struggles to gain control over the human condition. Enhancement is predicated on the illusion that suffering born of inevitable contingency can be escaped by a "technofix." Contingency, lack of control, is the chief source of what existentialist philosophers and theologians have dubbed anxiety, following Kierkegaard. T o be out of control is discomforting, and from it emerges the desire to dominate both nature and human nature. But of course, human finitude has the last word: W e are finally under the control of the nature that is destiny. Rather than endless supposed enhancements fueled by unwillingness to firmly come to grips with the human predicament, w e need world views that firmly capture the fact of contingency and allow us to live more easily by relinquishing the control that was illusory to begin with. N o enhancements will successfully eliminate limits, nor the imperative of accepting ourselves and one another as w e are, unconditionally, human beings as such. H u m a n beings are finite, bounded creatures subject to countless contingencies, and with very little final control. Against this background, enhancements appear less promising, and therefore less enticing. Perfection The right of only so-called perfect babies to exist is not a matter of public policy, but each time a selective abortion for a moderate or trivial imperfection occurs, w e are in effect accepting this principle. Gradually, society moves perilously closer to Nietzsche's norm: "The weak and ill-constituted shall perish:
232 first principle of our philanthropy. A n d one shall help them to do so."f21) All perfectionism must be tempered by an awareness of what Leslie A. Fiedler dubs "the tyranny of the normal."