Baylor fetal DNA test stirs controversy
December 21st, 2008By Todd Ackerman in the Houston Chronicle:
Baylor College of Medicine is offering and promoting a new prenatal test that screens fetuses for hundreds of genetic abnormalities. The test is promoted as diagnosing disorders that couldn’t previously be identified in utero, and is “sparking debate because it’s sure to result in more abortions.”
The ethical debate about the testing ranges from whether its accuracy is well-enough established to provide results to anxious parents; to whether it should be regulated by government; to whether such screening reflects a trend toward eugenics, in which society eliminates the defective.
… “There are troublesome implications to those statistics and the new testing,” says Dr. Mary Mahowald, a University of Chicago ethicist. “They suggest an attitude that deems the lives of people with disabilities not worth living. They’re also troublesome because the fewer people with disabilities there are, the more likely they are to be victims of discrimination.”
Bob Kafka, an organizer of the advocacy group Not Dead Yet, has urged Baylor to consult with disability rights activists to better understand that “this is a civil rights issue for us.”
Dr. Arthur Beaudet, chair of molecular and human genetics at Baylor, “argues that the institution is just responding to parents who’ve said they wish they’d known ahead of time that such a burden was in their future. Children with some of the conditions detected by the screening never walk, talk or eat on their own, he says, and their care can be lifelong.”
University of Pennsylvania bioethicist Art Caplan questions the comprehensiveness of the information that parents may receive with testing results. “But what kind of counseling [are they getting]?” he asks. “I think people undergoing this testing need to hear from people who’ve raised kids with these kinds of issues, or the disabled themselves.”
See also:
Prenatal genetic tests may cause birth defects — Los Angeles Times health blog
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December 22nd, 2008 at 9:29 pm
One of the comments made to the Houston Chronicle smugly states, “Bringing one of these children into the world is not for the average person”. Now, since I received our DS diagnosis prenatally, does that mean I’m above average?! Wow … what do ‘ya know (she said sarcastically)?
December 22nd, 2008 at 6:57 pm
Dr. Beaudet “argues that the institution is just responding to parents who’ve said they wish they’d known ahead of time that such a burden was in their future.” Well this is some hollow verbiage from the Chair of Molecular and Human Genetics, no less. How can you, as a scientific professional, honestly respond on ONE side of the argument? If it’s in the name of science then it’s a farce. If it’s in the name of corporate sponsorship then it at least makes calculated sense. I guess there’s a buck to be made from genetic non-conformism. Doesn’t mean I have to like it though.
December 22nd, 2008 at 5:14 pm
Thank you for this post. The issue of pre-selecting who lives and who doesn’t is a scary thing. I sympathize with those who want to know but wonder about the issues it raises. The more sophisticated our technology gets the more issues it creates.
Lon
I have put a link to your blog on my blogroll and will be referring to your news often I imagine. I appreciate what you have here. I am at: http://nolimitstolearning.blogspot.com
and write on assistive technology, disabilities and education.