The New Eugenics
“…we might produce a highly-bred human race…”
Sir Francis Galton started it. After his “study” of the inheritance of intelligence through the examination of noteworthy intellectuals within families, he followed his logic to what he believed the only reasonable conclusion: that humans should be mated to produce the fittest offspring. Of course, those not worthy of reproducing were discarded as “refuse” (Galton, 319).
Quite fortunately, this blatantly eugenic frame of mind has faltered over the course of the past century. But, as Benedict of Mendel’s Dwarf so powerfully puts it in his presentation at the Mendel Symposium, this selective reproduction has not gone gently into the night:
Today […] clinics offer screening for genetic disease and genetic diagnosis of pre-implantation embryos. Who can blame them? The demand is there, isn’t it? Which of you would want a child with anencephaly, or Tay-Sachs disease, or […] achondroplasia? (271)
While it is indeed true that such tests are available, many couples who do not pass through the process of in vitro fertilization are unable to test their pre-implantation embryos and, instead, must test the post-implantation fetuses. As Dr. Ruth Schwartz Cowan discussed in her “Heredity and Hope” lecture, prenatal screening is the only option for most expectant parents. Cue the ethical quagmire. A 2002 review found that fetuses prenatally diagnosed with a variety of genetic diseases are terminated at astronomical rates: spina bifida, 61-67%; anencephaly, 82-86%; Turner syndrome, 69-75%.
Is this ethical?
One affirmative response follows the line that “prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it [is] immoral to subject a child to the kind of suffering he or she would have to endure” (Bauer). But what if the consequent suffering is not so clear as that experienced by an afflicted toddler inevitably and irreversibly succumbing to the horror of Tay-Sach’s disease? What if the fetus is going to be a dwarf? What if he is going to have Down’s Syndrome?
This muddy ground can provoke strong and utterly conflicted feelings. In Mendel’s Dwarf, after choosing to terminate her possibly-achondroplastic fetus, Benedict recalls Jean’s reaction:
‘It was a kind of murder, wasn’t it? Expedient murder.’ I’d never heard her use language like that. It was almost more shocking than if she’d said ‘fuck.’ She was right, of course. There’s no way around it. Murder. (186)
When we see data that 92-93% of fetuses diagnosed with Down’s Syndrome are aborted, the question of what diseases fall under the umbrella of intolerable and unmanageable becomes pressing. As Patricia movingly states in her article discussing her daughter with Down’s: “I know that most women of childbearing age that we may encounter have judged [my daughter] and her cohort, and have found their lives to be not worth living.”
Is life as a dwarf worth living? Is life with three 21st chromosomes worth living? These are immensely difficult and personal questions that must unavoidably be answered with every positive result.