Preimplantation Genetic Testing: Neither Doomsday Machine Nor Panacea For Potential Parents

- Linda Hasadsri
Department of Anthropology, University of California at Berkeley
Postal Address: 2322 Haste St. #14, Berkeley, CA 94704, USA
Email: lexus@uclink4.berkeley.edu

Eubios Journal of Asian and International Bioethics 8 (1998), 81-82.


In the modern era of reproductive science, one person's progress has often been another's predicament; it appears that preimplantation genetic testing (also referred to as preimplantation genetic diagnosis) is no exception to the rule. This technological breakthrough has met with both open arms and opposition from various members of society ever since its first application in 1989. By permitting the detection of a wide range of genetic diseases in human in vitro fertilized embryos before the embryos are transferred to the mother's womb, PGT provides a unique means of preventing certain hereditary disorders. This has given new hope to couples at risk of having afflicted offspring, but, at the same time, has posed a moral dilemma for those currently living with these conditions, as well as for activists who consider it unethical to discard pre-embryos on the grounds of inherited disability. Some opponents of PGT believe that it smacks of eugenics and will lead to discrimination against the disabled. Others fear that science will not stop at eliminating mere disorders, and may eventually be used to weed out specific genotypes based on superficial characteristics such as hair and eye color.

According to Dr. Philip Reilly, current advances in genetic testing "could cause society to devalue certain individuals because of their genetic heritage. The history of eugenics in this century suggests that this is a legitimate fear." (1) The eugenics movement was first seeded in the United States during the late 1800's, and peaked between 1920-1930. Set against the backdrop of prejudice and paranoia, this movement led to the enactment of involuntarily sterilization laws in nearly thirty states, laws aimed at curbing reproduction by mentally ill, mentally retarded, and other "genetically undesirable" persons. It also led to strict immigration laws and the prohibition of interracial marriages, which were believed to result in inferior offspring.

Under the auspices of eugenic theory, Nazi health officials in Germany put thousands of mentally retarded persons to death via mass euthanasia, and encouraged Aryan men and women to wed in order to produce children of "superior" heritage. Many of today's opponents of PGT are frightened that history will repeat itself, and that these horrors of the past may once again become a reality. The elimination of embryos with inherited diseases or disabilities will, from their standpoint, "standardize" the population.

I, for one, do not agree with this view. Prevention of genetic disorders is not prevention of diversity. Each person is the unique product of his or her genes and his or her environment. Nature and nurture are inseparable, and one factor does not necessarily contribute more than the other to the overall development of an individual. The human race will not be homogenized if babies are disease-free at birth, for nurture still guarantees diversity even when nature seemingly may not. Even if PGT were to gain widespread acceptance, nature would still play a significant role in the shaping of each individual, because the reduction of specific disease genes does not interfere with the plethora of other genes that comprise a person. Thus, variety is still present and maintained. PGT cloning. Its purpose is not to create a society composed of genetically identical human beings, for the embryos in question are already inherently dissimilar and remain so ex post facto.

Nonetheless, some are concerned that this new technology may go beyond disease and lead to the advent of "designer babies." In such a scenario, prospective parents could utilize PGT to select embryos for purely selfish or aesthetic reasons. "One of the fears is that it might be used for other things, like sex determination," states Dr. Ryan, professor emeritus of obstetrics and gynecology and reproductive biology at Harvard Medical School. (2) But if PGT's applications are carefully monitored and regulated, such potential setbacks could be avoided. If kept under tight control and utilized only by well-informed couples, this newfound tool could improve rather than impair people's lives.

Children born free of specific genotypic and, subsequently, phenotypic barriers are enabled to achieve goals which may have been difficult or impossible to accomplish had they been born with a genetic ailment. There is nothing fascistic about giving a child the opportunity to attain the highest possible degree of personal fulfillment and development, a degree which, in most cases, would have been limited had he or she inherited a physically or mentally disabling condition. From my point of view, striving to eliminate genetic-based disease is no different than striving to eliminate infectious disease. Yet medical research involving infectious diseases and other non-inherited maladies is hardly considered a modern vehicle of eugenics or likened to Hitler's actions in W.W.II Germany. According to an anonymous author for Living Marxism, "It is appropriate for humanity to seek to defeat conditions which prevent us from reaching our full potential. . . Society should do whatever it can to make everybody's life as normal as possible." (3) This idea applies to scientists performing PGT as much as it does to scientists attempting to cure the AIDS virus. Both groups have the same basic goal: to improve the overall health and well-being of mankind. Yet rarely are scientists of the latter kind labeled as Nazis.

I acknowledge, however, that a problem arises with the above statement. The dilemma lies in what we as members of society consider to be "normal." By choosing to cast out embryos with abnormalities, a woman is clearly saying that although she wants a child, she does not want one on the exact terms that nature has offered. (4) The choice made implies that these undesired embryos are somehow "unnatural" because they are genetically aberrant. This is difficult to accept for many people, particularly those who regard physical and mental disabilities "as just another part of life's rich tapestry." (5) But carriers or victims of certain hereditary diseases are not "abnormal," as would be implied by any decision not to implant embryos with these ailments. They are merely genetically different - as we all are from one another - and, as mentioned before, genes play only a partial role in determining who a person is. Some would even go so far as to say that victims of heritable diseases are accorded special qualities because of their genetic makeup. Observers have often pointed out that Down's children are more loving and less self-interested than the majority of other people, for instance. But Down's children are not happier, simpler people by choice, but because they do not have the mental capacity to appreciate the world in the way we do. (3) Every child deserves the right to perceive and experience, unhindered, the world to its fullest extent. Mankind cannot continue to progress if its children are sheltered from reality, however harsh that reality may seem.

Because the definition of normality differs from person to person, discrimination is a possible (albeit unwanted) byproduct of preimplantation genetic testing. Bias is the antithesis to the aforementioned benefits provided by PGT, and can manifest itself in many forms or under a number of guises. For example, people currently living with genetic disorders might become an isolated group due to established use of PGT to eradicate, in newborn babies, the diseases or disabilities which they suffer from. As a result, this specific sector of the population might face higher treatment, insurance, and health care costs. In addition, members of this group might lose leverage in their fight to gain specific rights or resources, such as special education classes in public schools, if their numbers were to be increasingly offset by the birth of more and more non-afflicted men and women.

PGT could also have a corrosive psychological impact upon the disabled community. Some argue that because only non-diseased embryos are selected for implantation, mothers of these children are behaving in a biased manner towards the handicapped. They believe that parents of PGT-approved offspring are not only making a statement on their children's lives, but upon the lives of the physically and mentally challenged as well. However, I believe that PGT is not a matter of who "deserves" to live and who does not, but a matter of enhancing the lives of parents and the children they bring into this world by removing the social, financial, and emotional burdens that often go hand in hand with genetic disease. Parents who choose PGT are interested in benefiting their lives and the lives of their children, not in weighing the lives of others.

On the other hand, PGT may also have negative psychological repercussions among these high-risk parents who permit their IVF embryos to undergo the screening. A positive diagnosis of, say, the dominant gene for Huntington's disease in one of the embryos infers that one of the parents is affected and must face the traumatic consequences of this ultimatum. Furthermore, diagnoses of many other late-onset genes (such as those predisposing to cancer) could result in the carrier being "typed" socially for affliction by employers, insurance companies, and even potential marriage partners. (5)

Another drawback to PGT involves the embryos who do not make it past the screening, those who "fail the test." No one knows, or ever will know, what hidden talents or potential may be associated with the embryos being rejected because they happened to have the misfortune of carrying a single gene defect or a chromosomal abnormality. We will never know the magnitude of our loss - a dark price to pay in light of our progress.

Finally, the moral status of the pre-embryo must be called into question. Pro-life supporters maintain that these embryos are entitled to the same rights as fully-developed human beings and therefore cannot be terminated on the basis of their genes. By the same logic, however, certain single-celled organisms are entitled to human rights as well, for they, too, are the "precursors" of human life. One could argue on and on along the same Jainist lines until random molecules of DNA are likewise deemed worthy of human rights, but the issue at hand would still remain unresolved. Determining the exact point at which human life begins is a heavily charged and highly controversial issue, one that perhaps may never be concluded due to the many different values and beliefs held by various people around the world.

Overall, however, I regard PGT as a step forward rather than a fall back. Not every parent is financially and/or emotionally prepared to raise a disabled child. Preimplantation genetic testing can reduce the pain and anxiety caused by genetic illness. It also benefits the children who are born post-PGT, for they are given the best possible start in life: "a clean bill of health." (6) Although discrimination remains a very realistic threat, PGT alone cannot be singled out as a sole cause for this effect. Other forms of genetic screening, such as testing for genes predisposing for cancer, are just as likely to result in discrimination from the same primary sources: insurance providers, employers, and certain members of the general public.

Despite the numerous attacks made by critics, PGT is not about "competitive fertility." The idea of selective breeding of this sort applies to populations, not to individuals. The freely-chosen desire of an individual couple to reduce the frequency of hereditary illness in their offspring is considered to be a personal right, not a matter of eugenics. The couple's choice is not a part of a grand design to "improve" the human race according to some predetermined plan which would conform better to the social and economic ideal. (5) Unlike the stuff of modern science fiction, PGT is about improving the quality of individual lives, not the quality of an entire race. Those who speak of "competitive fertility," "selective breeding," and other eugenic euphemisms speak of humans as if we were livestock. Agricultural jargon is simply not applicable in this situation. The parental decision to reduce the risk of certain birth defects in their children is not the same as genetically engineering beefier cattle or bulkier pigs. It involves the prevention of harmful inherited conditions rather than the production of "superior" traits.

Said one anonymous man in a recent interview, "I would feel insulted if we were not allowed to have this test . . . that's not putting faith in the human being." Indeed, limiting a parent's choice to have in vitro fertilized embryos undergo PGT seems to slap mankind's scientific progress right in the face. Preimplantation genetic testing is not an instrument for the creation of a genetic monoculture; it is an opportunity for those informed individuals who seek positive changes for only themselves and their children. Such decisions at the personal level are a far cry from eugenics, and may steer clear of the backlash of discrimination if properly regulated and placed in the right hands. PGT is an open door to the future, but one through which we must tread wisely.

Sources
1. Reilly, Philip R. A Look Back at Eugenics. The Gene Letter. Volume 1, Issue 3: November 1996.
2. Johnson, Kate. Canada Voices Concerns About Pre-IVF Genetic Dx. Ob/Gyn News. Volume 32, Number 24: December 15, 1997.
3. Anonymous. In A Perfect World. Living Marxism. Issue 83: October 1995. < http://www.informinc.co.uk/LM/LM83/LM83_Taboos.html>
4. Bradley, Ann. Why Shouldn't Women Abort Disabled Fetuses? Living Marxism. Issue 82: September 1995.
5. Schulman and Edwards. Opinion: Preimplantation Diagnosis is Disease Control, not Eugenics. Human Reproduction. Volume 11, Issue 3: March 1996.
6. Gillot, John. The Spectre of Eugenics. Living Marxism. Issue 86: January 1996.
7. American Society for Reproductive Medicine. Fact Sheet: Preimplantation Genetic Diagnosis. ASRM Publications. January 1996.


Go back to EJAIB 8(3) May 1998
Go back to commentary by Leavitt
Go back to EJAIB
The Eubios Ethics Institute is on the world wide web of Internet:
http://eubios.info/index.html