Last week, Business Week published this essay by Elizabeth Schlitz, associate professor at the University of St. Thomas School of Law about her decision to carry her son, diagnosed with Downs’ Syndrome to term:
From my perspective, though, our increasingly sophisticated technological capacity to identify genetic defects in our children also presents some very real threats to the kind of world we will be passing on to them. A few years ago, author Christine Rosen wrote, "Those who oppose discarding unfit embryos or aborting unfit fetuses will soon become—perhaps already are—a dissident culture, tolerated at best, but more likely heavily regulated by a society that increasingly expects only healthy children to be born."
COUNTING THE COST. Scientists are beginning to tell me precisely how much dissident acts like not aborting my son cost society. A study published in 2000 in the American Journal of Medical Genetics concluded that the average lifetime cost of each "new case" of Down syndrome is $451,000. This study differentiated the lifetime costs of various types of prenatally diagnosed disabilities leading to abortions in one hospital in Michigan. For reasons I can’t fathom, Down syndrome turns out to be the most expensive by far. In contrast, the lifetime costs of conditions like spina bifida ($294,000) and cleft lip or palate ($101,000) seem almost negligible.
This study was offered to quantify the cost of banning "second trimester elective terminations for prenatally diagnosed abnormalities." Imagine the public outrage that would greet the publication of a study calculating the cost of not terminating pregnancies if it were broken down into a category such as family income. Although most of our civil rights laws now include "disability" in the litany of prohibited bases for discrimination—along with race, gender, and ethnic origin—our enlightened liberal commitment to diversity appears to go only so far. While we are willing to mandate accommodation to make jobs or public transportation accessible to a person with spina bifida, the social cost of accommodating her birth is increasingly being seen as exceeding her worth.
EUGENICS BY DEFAULT. This emerging public consensus in favor of eugenics is not the product of any sort of reasoned debate. There has been no referendum, no debate in Congress, no move to amend the Constitution. It’s emerging from the collective force of countless decisions by loving and caring mothers and fathers, in consultation with conscientious medical professionals who are using the truly miraculous and astonishing discoveries of brilliant scientists plunging deeper and deeper into the mysteries of life. These people are not intentionally practicing eugenics in order to create a perfect master race. They are simply trying to alleviate potential suffering and protect the quality of the lives they are bringing into the world.
But it is time for us to acknowledge the collective effect of these private decisions. Do we truly endorse the implicit message we are sending to our disabled brothers and sisters—that our commitment to diversity does not extend to genetic diversity? We need to confront the disconnect between how we see ourselves—as an enlightened, liberal society committed to fully integrating people with disabilities in all sectors of life—and how people living with the disabilities we would identify for extinction must see us.
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