Many associate the eugenics of old with a lack of compassion and with government coercion. Today's eugenics, in contrast, is perceived as an exercise of free choice and a compassionate endeavor. In modern sensibilities, tossing out embryos or aborting fetuses with genetic disorders, even disorders that will not surface until adulthood (with time for a cure to be found), is the right, moral and smart thing to do.
And yet, modern eugenics is as devoid of compassion and as coercive as the early 20th century variety. Case in point, this article in the New York Times about a couple who have used IVF with preimplantation genetic diagnosis (PGD) to make sure they had children without the mother's devastating genetic disease, Gerstmann-Straussler-Scheinker (GSS):
But the Kalinskys’ wedded life has taken a completely unexpected turn, one briefly described on Monday in The Journal of the American Medical Association Neurology. Like a growing number of couples who know a disease runs in the family, they chose in vitro fertilization, and had cells from the embryos, created in a petri dish with her eggs and his sperm, tested first for the disease-causing gene. Only embryos without the gene were implanted. The Kalinskys are now parents of three children who will be free of the fear of GSS.Sounds so great doesn't it? The Kalinsky children are "disease-free." It almost sounds like medicine has cured GSS or magically made GSS disappear. But it hasn't. The Kalinskys still had offspring with the GSS gene. Those children most likely got thrown in the trash.
When the treatment option of choice is not to find a cure for GSS, but instead to make sure no one with the GSS gene is born, then coercion is sure to follow. It becomes not a "choice" for couple like the Kalinskys to toss out their embryos that are "genetically defective", but an obligation. An obligation voiced by many a bioethicist:
Janet Malek, a bioethicist at the Brody School of Medicine at East Carolina University, said that people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation.Those couples who decide to embrace children regardless of their genetic make-up become sinners, genetic outlaws, that are to be shunned for their transgressions. This very sentiment is expressed in the comments by a reader who has family members that chose not to avail themselves of the latest technology:
"I have not been able to forgive them for taking a 50% risk with their child's future."There are academics, like Margery Shaw, MD, JD, who proposed that such parents should be prosecuted for child abuse.
And that is where the eugenic approach to genetic disease will likely end up: not with cures, but penalties for parents who dare have a child that is less than perfect and a lack of medical care for those born with genetic disease.
Let us not forget there were others who spoke of using death as a better, more compassionate way to deal with disease:
"The exposure of the sick, weak, deformed children, in short, their destruction, was more decent and in truth a thousand times more humane than the wretched insanity of our day which preserves the most pathological subject, and indeed at any price, and yet takes the life of a hundred thousand healthy children in consequence of birth control or through abortions, in order subsequently to breed a race of degenerates burdened with illnesses."Modern eugenics is as evil and deceptive a philosophy as the one that flourished nearly a century ago. The difference is, cognizant of the devastation it brings, we should know better than to embrace it again.
Rebecca Taylor blogs at Mary Meets Dolly