Tough questions raised by the possibility of prenatal genetic testing for autism
Dr. Arthur Caplan is the director of the Center for Bioethics at the University of Pennsylvania. In his article Would you have allowed Bill Gates to be born?” he noted these “tough questions” in regard to prenatal genetic testing:
-
As genetic testing moves into the world of mental health, we are going to face some very tough questions.
- Will medicine suggest that any and every variation from absolute normalcy is pathological?
- How can we draw lines between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers?
- Will parents have complete say over the kind of children they want to bear?
- And what sorts of messages will doctors and genetic counselors convey when talking about risks, probabilities and choices that involve not life and death but personality and sociability, genius and geekiness?
These are tough and huge questions that our society is far from able to respond thoughtfully and ethically to. The question that I am getting stuck on is the notion of distinguishing “between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers”—Charlie is smack in the middle of the spectrum with all the education and therapies he receives.
And without them, below the middle. “Severe.”
If expecting parents were told their son would have self-injurious behaviors involving his head, be minimally verbal in despite of and thanks to hours and hours of therapy, would struggle academically, would–whatever his true intelligence–be labeled “MR” and “in the lowest percentile”——and that there is so much one can do to educate and teach a child, that there is so much hope, and that a “different” child brings something to the world that makes the world different, yes, but differently beautiful——
What would they do?
Related Stories
POSTED IN: Disability Rights, Genetics, Parenting, Science, Treatment
5 opinions for Tough questions raised by the possibility of prenatal genetic testing for autism
Joseph
May 19, 2006 at 7:20 am
It makes no sense to abort children who are in the “lowest percentile”. Once these children are aborted, other children move into the “lowest percentile” - round and round we go until no one is left. This is just one of the reasons why eugenic abortions cannot be allowed to happen.
And without them, below the middle. “Severe.”
I’m not sure how you know this, BTW. I guess you sense this is the case.
Kristina Chew, PhD
May 19, 2006 at 8:07 am
Joseph, I’m not quite sure of what you mean by “I’m not sure sure how you know this”???
What I know (or am trying to know) about “severe” vs. “mild” autism is from raising Charlie. He’s highly teachable and really likes school and learning, but not every school setting or teaching method works for him—-with those that don’t, he can seem severe, and not the bright kid he is.
Tera
May 19, 2006 at 8:51 am
The question that I am getting stuck on is the notion of distinguishing “between disabling diseases such as severe autism and more mild differences such as Asperger’s, which may give society some of its greatest achievers”
That bothers me, too.
I remember something Phil Schwartz (president of the Asperger Association of New England) said about IQ that’s relevant here. I can’t find it now (d’oh!) but it was something like:
If you look at my [Phil’s] IQ score, I’m three nobel prizes short of where I should be. But [my autistic son] is far beyond what his IQ predicted.
I think “accepting” people on the basis of what Great Societal Contribution they can make is not acceptance at all. Besides, what makes a Great Social Contribution is debatable.
Temple Grandin (who is a proponent of the Great Societal Contribution argument) designs meat-packing plants. If you were a vegetarian and/or believed that killing animals for food is wrong, how much of a “contribution” is that for you?
I review videogames horror/cult/weird films. There are plenty of people who either don’t like those things or vehemently hate them. I either don’t contribute to their society at all or contribute to the problems they see in that society.
There are more ways to contribute than to be “some of society’s greatest achievers.”
Autism Vox » “We must all play god when it comes to genetics”
May 19, 2006 at 8:55 am
[…] In light of the recent discussion here at AutismVox on a prenatal genetic test for autism, an article by Dr. Arthur Caplan, the director of the Center for Bioethics at the University of Pennsylvania, raises even more tough questions regarding prenatal genetic testing. […]
Autism Vox » Procreative Beneficience, PGD, and the Selecting of the “Best” Children
Jan 6, 2007 at 11:44 pm
[…] Back in June, I posted about a test to screen male embryos for couples with families with a history of autism; a team at the University College Hospital’s assisted conception unit in London has applied for a license for the procedure. I quote from my post, whose title was Designer babies (not autistic ones); my sentiments about PGD and autism remain the same. This is not just the specter of a prenatal genetic test for autism. […]
Have an opinion? Leave a comment: