by Siavoche Siassi
With the rapid progress of modern-day medicine, one would be hard-pressed to find a scientific advent that has not brought with it a number of far-reaching implications for society as a whole. Recent developments in the human genome project have yielded a number of scientific procedures which only half a century ago would have been considered outlandish. A particularly controversial practice which has emerged is pre-implantation diagnosis, in which normally fertile couples choose to undergo in-vitro fertilization to screen each developing embryo for genetic disease prior to implantation in the mother’s womb. This diagnostic process, facilitated by cutting-edge genetic technology, has the potential of not only preventing maternal-fetal transmissions of disease, but also allowing parents to selectively pick and choose traits that they would like their children to possess, such as sex and hair color.
While I am aware that many have raised valid moral objections to extra-uterine fertilization as a procedure interfering with natural human reproduction, and that there are still widely conflicting views with respect to the formal definition of human conception, I must refrain in this paper from discussing the ethical implications of in-vitro fertilization in and of itself. Rather, I will address the moral validity of pre-implantation genetic diagnosis, distinguishing between preventive medical measures and other purposes of non-essential genetic design. While pre-implantation diagnosis that is solely intended to prevent an otherwise unviable and sick fetus from developing should be actively encouraged by the scientific community and bolstered by federal funds, it should not be used as a vehicle for parents to create what they perceive to be the perfect child.
A rigorous examination of some of the underlying ethics of utilizing pre-implantation genetic diagnosis entails familiarity with its biological methodology. Traditionally, pregnant women whose babies are at high risk of acquiring genetic diseases grave enough to warrant termination of the pregnancy have been offered a number of prenatal procedures in-utero to diagnose an already implanted and maturing fetus (Flinter 1008). Pre-implantation genetic diagnosis, by contrast, involves testing the early embryo after in-vitro fertilization has taken place and is often preferred by parents because it circumvents the psychological consequences of abortion (Flinter 1009). Specifically, once the embryo has reached day three of development (6-10 cells), a biopsy is taken to screen for any genetic defects, and only healthy embryos are then implanted into the mother for the remainder of the pregnancy (Flinter 1009). Alternatively, maternal oocytes, or eggs, can be individually screened prior to fertilization, though this route is informative only for maternal genes (Nagy 3). Consistent with the costs of other newly developed technologies, the price tag for pre-implantation diagnosis is staggering, ranging currently from $6000 – $10,500 (Flinter 1008).
‘Morally justified and scientifically appropriate’
It can be argued that there are a number of circumstances which would warrant pre-implantation genetic diagnosis in a morally justified and scientifically appropriate manner. For example, this procedure has been used for screening against sex-linked disorders such as Duchenne muscular dystrophy, fragile X syndrome, and Lesch-Nyhan syndrome (Eisenberg 570). Single gene defects such as cystic fibrosis, and chromosomal abnormalities such as Down’s Syndrome and other trisomies are other broad categories of disease which are commonly screened for using pre-implantation genetic diagnosis (Flinter 1008). Parents at high risk for transmitting such diseases to their babies should at least be offered this procedure, leaving the moral onus of carrying out the procedure with them. It is understandable that rather than run the risk of having to terminate the fetus in-utero, which many parents have ambivalent reactions to, parents would want to screen potential embryos in-vitro to preclude enduring the emotional pressure of abortion.
Moving ‘outside medical parameters’
Given that pre-implantation genetic diagnosis involves the manipulation of pre-embryonic cells and the selection of favorable genetic traits, little foresight is required to imagine the extent to which this practice could potentially be applied outside medical parameters. Many have argued that parents should have the right to not only screen for certain diseases, but also selectively choose physical characteristics based entirely on personal whim. Such applications should be discouraged by healthcare professionals not only because the procedure carries significant risks, but also because the long-term sociological and biological consequences can be profound. With respect to specific gender selection, Savulescu and Dahl argue that most parents who would choose to exercise such an option tend to already have other children, and their preference for a particular sex in the unborn baby would be “based on the gender of their already existing children” (1879). Furthermore, they argue that because most parents would choose a particular sex different from that of their already existing children, the notion of sex selection reinforcing gender biases is null (Savulescu 1880). Lastly, they disagree with the claim that allowing sex selection to take place via pre-implantation genetic diagnosis would result in a misallocation of healthcare resources, arguing that if people are permitted to spend their own money on cosmetic surgery, it is “hard to see” why people who want to pay out of their own pocket for sex selection should be “treated differently” (Savulescu 1880).
Unfortunately, the arguments submitted by Savulescu and Dahl suffer from a number of unsubstantiated, implicit assumptions. They assume that that vast majority of parents who would utilize pre-implantation genetic diagnosis for sex selection already have children and are merely trying to balance their families based exclusively on gender. But what about those parents who do not have existing children and want just a single child who is of a particular gender? Echoing concerns that I share, Damewood argues that allowing parents this much latitude could “threaten the innate diversity of the human population,” particularly in societies where rampant gender biases already exist such as in many Middle and Far Eastern cultures (3144). To address this argument even more broadly, one might ask, should society promote the idea that the criteria of a balanced family ought to encompass gender? I would submit that parenthood demands the height of selflessness, and that prerequisites for being a parent include assuming responsibility for inevitable uncertainties with children, accepting that they may develop to be diametrically opposed to what was initially envisioned, and hoping that one’s children are simply born healthy.
Misuse and abuse
As to the argument by Savulescu and Dahl that using pre-implantation genetic diagnosis for sex selection would not result in misuse of scarce healthcare resources, I would argue to the contrary. While Savulescu and Dahl rightly point out that doctors are currently practicing certain cosmetic roles which have little to do with promoting health per se and do not exhaust public health funds since they are privately funded, this does not excuse adding yet another costly procedure and further altering the traditional role of doctors (1880). More importantly, however, pre-implantation genetic diagnosis still suffers from a number of technological limitations, a fact which should in and of itself serve as a reason to use it prudently. By assuming that the methodologies and societal ramifications of cosmetic surgery are analogous to those of pre-implantation genetic diagnosis, Savulescu and Dahl present a patently false claim. Aside from the fact that cosmetic surgery is performed on individuals who choose to undergo the given procedure with their own cognizance and that pre-implantation genetic diagnosis involves actively altering a population’s gene pool, a study by Strom et al. of 102 pregnancies after pre-implantation diagnosis showed that the procedure was associated with a risk of multiple gestations, cesarean delivery, placenta previa and unknown long-term effects (1631). When viewed through the prism of possible pregnancy complications, it is reasonable to conclude that pre-implantation genetic diagnosis should be used as a last resort to prevent diseases and only diseases from being passed on to babies.
Furthermore, allowing pre-implantation genetic diagnosis to be used for non-medical reasons could result in a number of unintended societal consequences, such as the creation of a super-class of people and the promotion of a false sense of wellness. For example, given that the procedure is a rather costly one at the moment, Pang argues that pre-implantation genetic diagnosis could create a “genetically engineered over-class and a disease-prone underclass, the higher likelihood of the former being associated with richer people” (1078). Pang’s assertion is certainly plausible when one considers that not only is gender capable of modification with pre-implantation genetic diagnosis, but also hair color, height, strength, and intelligence. Moreover, how would health insurance companies, looking to minimize costs, view humans seeking coverage who were not genetically screened for a multitude of diseases? Many have argued that attitudes may be fostered that “promote discrimination against the sick and disabled because they were not ‘designed’ properly prior to birth” (Damewood 3144). Damewood expresses concern that humans born with superior genetics could possibly have less of an incentive to engage in long-term, healthy behavior such as regular exercise and proper nutrition (3143). Thus, the shield of superior genetics may have the paradoxical effect of breeding apathy, creating a new set of public health problems. While many would be quick to dismiss these notions as a slippery-slope set of arguments, there is simply no question that modern genetic technology and its potential applications warrant such discussions given the absence of regulatory laws.
Savulescu illustrates yet another potential societal consequence of allowing parents to choose traits for their babies favorable to them and their families. She argues that parents should also have the right to undergo pre-implantation genetic diagnosis and select traits that may not be life-threatening, but are widely perceived to be disabilities. For example, she directly asserts that deaf parents should be allowed to select deaf children to order to facilitate communication and share with their children the deaf experience (Savulescu 772). She also suggests that dwarves should be allowed to selectively choose dwarf babies (Savulescu 772). Should full legislative protection regarding the utility of pre-implantation genetic diagnosis be extended to parents, the aforementioned scenarios may very well become realities we must confront.
Deserves our ‘fullest attention’
Progress in Western medicine has advanced with such celerity that the field of genetics has become the source of an enormously dangerous temptation: to use genetic knowledge to facilitate disease prevention and treatment efforts as well as to give humans more flexibility to select characteristic traits. Given the complexity of pre-implantation genetic diagnosis technology and its wide array of applications either for better or worse, extensive regulatory measures emanating from federal and state governments ought to be central to this discussion. It would be precocious, especially at the federal level, for institutions such as a Department of Health and Human Services to establish regular, diverse committees consisting of bioethicists, sociologists, legal advisors and members of all religious denominations to debate the issue publicly. Ultimately, however, it will require either federal or state laws to ban the use of pre-implantation genetic diagnosis for non-medical reasons. Determining to what extent pre-implantation diagnosis ought to be applied beyond the parameters of medical reasons is an almost insurmountable task. What is quite clear, however, is that the presence of new technology carries with it a series of new moral and ethical considerations that deserve our fullest attention.
Siavoche Siassi is a junior majoring in Health Promotion and Disease Prevention. He loves doing handy work around the house and is a self-professed “massive news junkie.”
Dahl, Edgar; Savulescu, Julian. (2000). “Sex education and pre-implantation diagnosis.” Human Reproduction, 15 (9), 1879 – 1880 .
Damewood, Marian. (2001). “Ethical implications of anew application of preimplantation diagnosis.” JAMA, 285, 3143-3144 .
Eisenberg, Vered H. (1997). “Preembryo research: medical aspects and ethical considerations.” Obstetrical and Gynecological Review, 52, 565 – 574
Flinter, Frances A. (2001). “Preimplantation genetic diagnosis.” British Medical Journal, 322 (7293), 1008 – 1009.
Nagy, Anne-Marie. (1998). “Scientific and ethical issues of preimplantation diagnosis.” Annals of Medicine, 30, 1-6 .
Pang, Tikki. (2002). “The implact of genomics on global health.” American Journal of Public Health, 92 (7), 1077-1079 .
Savulescu, Julian. (2002). “Obstetric outcomes in 102 pregnancies after preimplantation Genetic Diagnosis.” American Journal of Obstetrics and Gynecology, 182, 1629-1632.