July 26, 2006

RACING TO GATTACA (via Lisa Fleischman):

Confessions of a "Genetic Outlaw": A new method for screening embryos for disease may provide more reason to brand some people dissidents for bringing their kids into the world (Elizabeth R. Schiltz, 7/20/06, Business Week)

From time to time, we are all confronted with the disconnect between how we see ourselves and how others see us. I've always seen myself as a responsible, law-abiding citizen. I recycle, I vote, I don't drive a Hummer. But I've come to realize that many in the scientific and medical community view me as grossly irresponsible. Indeed, in the words of Bob Edwards, the scientist who facilitated the birth of England's first test-tube baby, I am a "sinner." A recent book even branded me a "genetic outlaw." My transgression? I am one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies. [...]

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.

The Holocaust began with the "best" of intentions.

Posted by Orrin Judd at July 26, 2006 9:32 PM

It is not for them to decide who should live or die. When moral decisions are determined by their associated monetary costs, we become materialistic monsters.

Besides, aren't we admonished to preserve diversity despite the costs? Surely the evolutionists would agree that there must be some benefit to these genes, else they would have been eliminated.

Having worked with Downs Syndrome children, they are capable of language, reading & writing, and arithmetic, though perhaps not as well as most, but they are fully human and often a real joy to be around. We are all defective in some way, so what will the next defect that is too expensive to tolerate be?

Posted by: jd watson at July 27, 2006 12:21 AM

As the father of a child born with a severe heart defect (which was diagnosed during a pre-natal ultrasound)I'll stand with the dissidents, sinners and genetic outlaws, for I am one of them!

Posted by: Dave W at July 27, 2006 12:52 AM

$451,000 isn't much. I'm sure souls are going for lots more these days ... unless they're another example of how everything costs less than it used to.

Posted by: Joseph Hertzlinger at July 27, 2006 2:00 AM

Not trying to be argumentative or facetious here, and I don't question the decisions made by the parents, I'm just asking the obvious, to me, question, why have the pre-natal tests if there is no question of an abortion no matter the results?

Posted by: erp at July 27, 2006 7:36 AM

I'm just asking the obvious, to me, question, why have the pre-natal tests if there is no question of an abortion no matter the results?

I'd say partially to give people time to prepare. There are things like cleft palate or polydactylism that can be treated with surgery right after birth, but it's good to already know about. Conditions that require special diet or treatment, or where things like bone marrow or umbilical cord blood transplants will be useful are again good to test for.

And if they test for one thing, they end up testing for everything.

Posted by: John Thacker at July 27, 2006 9:48 AM

John Thacker is correct. There have been many advances in dealing with Down's Syndrome which have made Down's people far more long-lived than they used to be -- the earlier you know, the better your chances of improving the health and longevity of such a baby. Also, fetuses with spina bifida have been operated on while in the womb, vastly improving the condtions of some of the afflicted.

Posted by: Lisa at July 27, 2006 10:32 AM

Thanks. Now it makes sense.

Posted by: erp at July 27, 2006 1:00 PM