This paper reflects the research and thoughts of a student at the time the paper was written for a course at Bryn Mawr College. Like other materials on Serendip, it is not intended to be "authoritative" but rather to help others further develop their own explorations. Web links were active as of the time the paper was posted but are not updated.
2000 Third Web Report
by Joseph Santini
Haverford College has had extended arguments over the course of the past few weeks on the subject of egg donation. People with Down's Syndrome who live in Great Britain make appointments at American hospitals for heart transplants. Parents in China routinely put to death children of the wrong gender. These disparate elements are all symptoms of the beginning of the Eugenics Wars, a series of what I feel will be crucial legal, political and literary battles over the determination of what our children - and citizens - will be: the question of their rights to liberty and happiness is superseded by the question of their right to life, and this right to life has been, in the ideology of the proponents of eugenics, compromised by their ability to achieve liberty and happiness. This right to life is modified further by a construal of what it means to be the ideal person, and medical and cultural definitions take priority in any such search.
Take the Down Syndrome case. In America and Great Britain, policies written and unwritten forbid heart transplants to individuals with Down's syndrome. The rationale? It varies from doctor to doctor, and reasons can be as innocuous (though misleading and untrue) as inability to keep up with strict exercise and diet regimens to the more honest response that the general belief among the medical community is that people with Down's aren't considered as viable candidates for heart transplants as people without Down's because "People with Down syndrome are not considered as valuable to society" [Glatzer] Fifty percent of the 250,000 American sufferers of Down Syndrome, according to Glatzer, suffer from severe heart problems due to a hole in the septum of the heart. 125,000 people with these heart problems are routinely rejected as possible candidates for heart transplants because of their "lack of value." The often-given rationale that people with Down's aren't able to deal with the exacting exercise regimen is easily disputed by the realization that children are given transplants and expected to have aid from parents, often not as well trained as the caretakers, partners, and aides of those with Down's.
It all comes back to the issue of personal prejudice: "If asked to make a decision between a normal person and a Down's patient, [we take] the person who is the most whole." [Glatzer] This quote, uttered by a doctor, is indicative not of the doctor's prejudices against the disabled community but of their perception of the life of a disabled patient. This perception extends to all facets of life. According to Glatzer's research, "it is statistically more likely for an alcoholic, drug user, felony prisoner or person who has just attempted suicide to get a major organ transplant than a person with Down syndrome. This remains true even if the Down patient is married, holds a full-time job, attends college and has never touched a dangerous substance." [Glatzer] Place this in conjunction with the recently-quoted doctor's musings about who is "most whole" and the only logical conclusion is that wholeness is based on physical characteristics and supposed mental capability; behavior and actual perceptions of the individual are not taken into consideration.
The problem is much worse in Britan; John Dark reports that in "a 14 year programme with over 800 transplants we have received only one referral for a patient with Down's syndrome. A qustionnaire sent to other UK transplant centres revealed only two other referrals... None of these patients underwent transplantation." [Dark] Despite the fact that "no published work addresses the risk of heart transplant in Down's syndrome" [Dark] patients, medical providers "worry" the procedure will be too much for them and the patient would be unable to understand the process. This despite, of course, the routine heart transplant procedures performed on children, and the lack of information on heart transplants in Down's patients in general. In the UK, as well as the US, philosophical examination reveals doctors prefer to work on patients who have a "capacity for independence" [Edwards] and who have a high degree of an ambiguous, undefined "wholeness." "We take, when faced with a choice, the person who is most whole, as it were." [Edwards]
I make much of this case because the same sorts of arguments can be applied to the more obvious case of eugenics: egg donation. At Haverford and Bryn Mawr, a recent ad published in the Bi-College News offered $25,000 for an egg "donation." This in itself isn't eugenics; however, the same advertisement requested very specific physical characteristics: blonde hair, blue eyes, of a specific height, and other requirements read as a checklist for the common "beauty" denominator, and the simple fact of the advertisement's publication in a highly-respected institution's-Haverford and Bryn Mawr's-newspaper read as an additional requirement of intelligence. Such a checklist isn't uncommon, and nor is the furor inspired by the advertisement itself; in 1999, $50,000 was offered in Ivy league newspapers by a couple advertising for "an 'intelligent, athletic' egg donor who is at least 5 feet 10 and has an SAT score of 1400 or better;" [Newsweek] egg-donation clinics around the country routinely charge $6,000 for access to their database of potential egg donors, and more often than not those donors are between 21 and 25, blonde, tall, good-looking, and have, quote, "Great Genes."
Here the biggest and most difficult question is the distinction between the loving couple who happen to be infertile and genuinely want children... and those who, instead, commodify physical qualities and traits in their search for the perfect child. When eugenics comes into the question, the child no longer is the issue, but what the child looks like and potentially is in terms of intelligence. These are, for the most part, physical components, and many parents delude themselves into thinking of such eugenics as determinant of the personality of the child, as well (hence the thousands of questions asked of the individual who goes to donate sperm, and eggs.) This is a false ideology, neglecting the doctrine of nurture as well as nature, and it smacks scarily of parents not wanting to raise their children, but have them be perfect from the start, assuming if they just leave the kid alone it won't go bad.
The connection between egg donation and heart transplants for those with Down Syndrome is, stated simply, that people decide who will live and who will die based on physical characteristics. Laura Purdy remarks that while "Disability rights activists argue that attempting to prevent the birth of disabled children discriminates against the existing disabled population as well as the unborn" she finds this argument "founded on a mistaken confusion of the self and its properties. For parents to choose to increase the odds of a healthy baby should not in itself damage the self respect of the existing disabled, nor is it a form of discrimination against them." [Purdy] This argument, however, fails to take into account the fact that "disabled" is not necessarily equivalent with "unhealthy;" what is really being argued is not the increased odds of a healthy baby but the increased odds of a "perfect" baby, a baby conforming to a medical standard for the human physique. Disability rights activists have a right to be concerned, especially on a higher ideological level: for once the doctrine of perfection is established, soon even minuscle differences will loom powerfully in the minds of those who perceive them and conform to that standard.
Purdy then proposes a "thought experiment": "Suppose that before conception we could put in an order for our children's desired characteristics. Imagine a checklist of fatures that many of us would prefer our children not have. These range from the serious such as Tay-Sachs disease to the non-life threatening such as blindness, cleft palate, or club feet. Would anything be wrong with failing to order up these conditions? If not, then it seems that the objections of disability rights advocates depend on positing a moral difference between failing to conceive and aborting." [Purdy] Purdy never even considers the possibility that there might indeed be something wrong with failing to order up those "conditions." Granted they are not pleasant, to say the least, and granted they are conditions the child themselves might prefer not to have: we all desire to achieve some sort of state of normativity. They are, however, normative states for the genetic code of humanity; diversity is precious, both its good and bad parts, and must be preserved if we are to continue to evolve as a race. Science fiction is full of stories in which we (or They) become so physically alike to one another that a particular virus or one simple action can wipe us all out. Our genetic diversity is our protection against such an occurrence.
Purdy also fails to realize the implications of her own argument. If we say that those conditions are not desirable and that it is acceptable to "not order" them, where is the line drawn? What's the difference, biologically, between a gene containing the information for Tay-Sachs disease, and a gene containing the information for black skin? What if a parent sincerely didn't want their child to face discrimination in the school system, and aborted every child they had which didn't conform to the blonde-blue eyed denotation of perfection which exists as a monolith in our pleasure-oriented culture? This seems to be an unapproachable point from the medical view of biogenetics; they view humanity from a Western medical standpoint advocating an essential perfection, a uniform human state-of-being without differences.
Purdy is a bioethicist; presumably, her principles reflect modern thought on bioethics in relation to eugenics and these sorts of life/death choices. She focuses on disability, however, and I focus on the fact that "disability" really has no meaning in the world today; the focus is on 'good genes' and disabilities, different looks, and low intelligence are all lumped together under the disability tent. I believe that the bioethical view is compromised by the medical view; unable to see past the temporary benefits to the individual, bioethicists have yet to focus on diversity as a means of survival. Patricia J. Williams, a lawyer, notes that "our ultimate success, the test of our humanity, is in the tolerant, self-effacing extinction that comes from merging with all that is diverse, unexpected and exuberantly impure" [Williams] Williams discusses Darwin's "Origin of Species" and notes that "he seems to employ creationism as a central, if unspoken, metaphor... it is... an object lesson in how much what we call 'scientific' is deeply infused by the political, cultural and aesthetic valuations of the author. Similarly, today's genetic science, which so many shrug off as merely an improvement on 'natural selection,' is anything but." [Williams] In an age where perfection has become a value beyond money, where the elite are the perfectly beautiful and often those who are made so, scientists born into and developing in this culture naturally and understandably see this perfection as a natural goal. The disabled aren't shown on television; race is shown to a limited extent: all that are seen en generale are the bouncing cleavages of surgically enhanced, tall blonde women and their masculine counterparts. We are taught that that is what we want to be, and bioethicists absorbthat as much as the rest of us. Their science does not provide them a protective shield against hypocrisy, stupidity or the engraving of social consciousness upon the personal consciousness.
Seen this way, the general permissiveness of bioethicists regarding such things as the denial of heart transplants to needy patients with Down Syndrome and the almost Nazi-like eugenic focus of egg donation: both actions are actions enforcing and reinforcing the doctrine of Heaving Chest and Clever Pecs: the creation of and belief in perfect people. These concepts are fallacies; in our Biology 103 course we have discussed how the individual is a result of diversity; there is no such thing as a perfect person, and indeed someone not considered "perfect" might well have the appropriate physiognmy to deal with a situation that the "perfect" person could not. The dangers of choosing any particular trait over another as "better" are patent and have been discussed by the likes of Stephen J. Gould and Carl Sagan, as well as Darwin. Once you decide someone's life quality is better than another's and attribute that to a physical trait, you begin travelling the road to racist thought and ideology: Nazism, or fascist thought, is an inevitable result.
One last aspect of culture affecting the bioethical thought on this subject is the public's view of genetics. Genes are something you "have" or can "get" through mystical and undefined processes. "Everything is genetics, for awhile, at least... violence is genetic, cancer is genetic, your personality is genetic. And [there is] extreme exaggeration and reification of genetics right now, which is being played out a little bit in the reproduction area, as well." [Annas] At the moment, would-be parents believe everything can be determined genetically, down to the child's favorite books (a question often asked of potential donors by interviewees.) This belief in the mystical power of genetics rivals that of natural selection, of magic in the middle ages, of philosophy in greece. Somehow able to resolve any problem, genetics in pop culture promises not to cure what ails you but to give you a place within society based on your physiognomic setup. This fallacy is partially what causes the objectification of those with Down syndrome as well as fuelling the desire for "perfect" genes. In the movie "Gattaca" a world of genetically perfect people exist; people with imperfect genes are considered scum, unworthy of the world; this movie speaks to the subcutaneous fear of inability to break out of the powerful placing effect of eugenic thought, a fear which exists even as people fight to produce children who will be powerful pieces on that potential futuristic chessboard.
Diversity, however, is a biological gold mine. "Too frequently, one group of human beings has justified oppression against another group on the grounds of allegedly biological arguments," says Paul Grobstein in his essay on "Diversity and Deviance, adding that "any argument of this kind reflects a profound misunderstanding of basic principles of biological organization." [Grobstein] He supports my argument when he states that "The success of biological systems in general is due not to homogeneity but to heterogeneity: they depend critically on the existence of differences in the elements which make them up. The human species is no different, and this alone is enough to raise serious questions about any effort to rank one human or group of humans against another." [Grobstein] The human desire for perfection, expressed through eugenics of both post- and pre-natal sorts, would seem to contradict this. Just as Grobstein states that "It is meaningless to ask whether one lymphocyte is better than another," [Grobstein] so is it meaningless to say that one person's "quality of life" or "wholeness" is better than another person's: all are necessary for the survival and optimal existence of the human race as a whole. In other words, as Grobstein notes, diversity is important not only for our interdependence now but for our ability to face new and diverse challenges in the future.
As for myself, I have mixed feelings about the issues of eugenics.
On the one hand I feel horror at the thought of any difference being
aborted or deleted from the American or human consciousness. On the
other hand, I remember reading the Dan Simmons novel Endymion, in
which he describes a society which genetically alters members who
wish to be so altered in order to become part of extrasolar planetary
environments. The beauty of the one is balanced by the horror of the
other, and neither issue can really play itself out in my mind
without finding opposition from its counterpart. It is important to
note, however, that in the science-fiction novel eugenics was used to
enhance and create diversity, not to decrease it: this fundamental
difference in usage explains my feelings on the topic. I am against
anything which decreases the diversity of the human race.
Nota Bene: Three of my articles were found on the Wilson article index [notable by their wilsontxt.hwwilson.com domain name] through the Bryn Mawr web server. You may need to connect to that server before being able to access those articles.
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