The Washington Post runs letters in response to “Haunting Echoes of Eugenics.” Bridget Brown, a woman with Down syndrome, compares widespread prenatal screening and termination with genocide directed toward people with disabilities. Her words:
I have a full and wonderful life, and the world needs to know that I do not “suffer” from Down syndrome. Most people I know with disabilities have full and productive lives. My heart breaks when I think that I might be part of the last generation of people with Down syndrome. The world will never again benefit from our gifts. But I will continue to hold hope for people with disabilities. And I will pray for all the people who think we don’t have the right to live.
Ms. Brown’s letter goes to the heart of the ethical conundrum surrounding universal prenatal screening, which Michael Sandel powerfully explores in “The Case against Perfection: Ethics in the Age of Genetic Engineering“ (just out on Harvard University Press). Is total reproductive choice completely beneficial to society? Ms. Brown’s experience doesn’t lead her to that conclusion. As a person with a disability* (PWD), she encounters daily the uninformed and negative preconceptions people have about her and the quality and value of her life.
Sandel explores the issues around reproductive choice and views it as a mixed blessing. He worries that individuals who are granted this kind of control over their children will come to be held accountable for their children’s perceived flaws. The implication: that those who screen and terminate will come to be seen as “responsible” parents, thus justifying a society that lacks empathy and compassion for the lives of those who differ from accepted norms.
Taken together, the aggregation of our private, individual decisions seems to reflects a deep and undiscussed discomfort with those who are different. The implicit message we seem to be sending is that while ethnic diversity is valued and supported in our society, genetic diversity is not. How comfortable would any of us be explaining that paradox to Ms. Brown?
Further reading on this topic: “Confessions of a ‘Genetic Outlaw’”, by Elizabeth R. Schlitz, in Business Week, July 20, 2006.
It’s worth noting: this is not a discussion about Roe v. Wade. It is a discussion about the paucity of informed consent in prenatal screening, and the collective social effects of individual decision-making.