Prenatal screening for autism nearer; Ethical questions raised
January 12th, 2009From the [UK] Guardian and the [UK] Telegraph:
Prenatal screening for autism is closer to reality today with the release of a study that links high levels of testosterone in the womb of pregnant women to autistic traits in their children. The new data is prompting experts to call for a public debate about prenatal testing and selective termination for autism, as some question whether it is ethical and socially responsible to prevent the births of individuals who could have extraordinary abilities in math, science and other areas.
The research published today in the British Journal of Psychology by scientists at the Cambridge University’s Autism Research Centre followed 235 children from birth to the age of eight and found links between autism and high levels of testosterone in amniotic fluid.
“If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population?” said [Professor Simon Baron-Cohen, director of the research team]. “We should start debating this. There is a test for Down’s syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition.”
The research could, equally controversially, open the way for treatment, he said. “We could do something about it. Some researchers or drug companies might see this as an opportunity to develop a prenatal treatment. There are drugs that block testosterone. But whether we’d want to would be a different matter.”
… “I think it is really important that the autism community has a key role in shaping the research priorities in this area,” said Amanda Batten, head of campaigns for the [UK] National Autistic Society. “There could be some real gains in recognizing autism early. There are benefits, but there are concerns. People think it is about eugenics.
“It is important to stress that everyone with autism has the potential to make a unique and valued contribution to society. It is not always the autism that is a problem. It is other people and a lack of services and support.”
See also:
Autism test on unborn babies raises fears of rise in abortions – Daily Mail
Disorder linked to high levels of testosterone in womb – [UK] Guardian
Mother of autistic child: ‘My worry is that having an autistic child will become a bad thing’ – Interview with Charlotte Moore, mother of two sons with autism – [UK] Guardian [audio file].
If we screen out autism we run the risk of losing genius, too – By columnist Magnus Linklater in the [UK] Times. An excerpt:
So if we found a test for autism, and gave parents the opportunity of aborting the foetus, we might eliminate not just an unwanted and difficult child but a potential genius.
Here lies the dilemma. Should medical science offer the opportunity to eliminate a child who may turn out to be, not only a valuable member of society, but an important contributor to its future? And here lies a further twist in the moral maze. If that were the decision, what would be the justification for deciding that only the most intelligent members of society should be protected, while the less able were judged expendable. Does not that come close to Nazi-style eugenics, the one aspect of genetic engineering we have all determined will never again be contemplated?
… Can we afford to lose a future Einstein?
See earlier post here.
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January 23rd, 2009 at 11:34 am
This is infuriating! It’s OK to terminate for Down syndrome, but it’s ethically questionable for autism because “it’s linked to talent”? Well let me tell you something, Prof. Baron-Cohen — my 7-year-old daughter with Down syndrome has plenty of talent! She has the talent of walking into a room and making every single person smile just by her presence. She has the talent of making her teachers beam with pride whenever she learns a new word or masters a new skill. She has the talent of not understanding or ever expressing prejudice because of the way someone looks or acts. She has the talent of teaching people to be more accepting and less fearful of disabilities when they see her laugh, run, dance and play. It’s a very sad and troubling day when the only value we place on a person is based on his or her IQ.
January 13th, 2009 at 11:36 am
This topic is both sad and scary and is in indication on our society’s lack of respect for human life.
Once we eliminate the Down syndrome and autism population, who’s next?
I think anyone who is considering termination because of a “flaw,” should meet my five-year-old daughter.
January 12th, 2009 at 7:03 pm
My son has a chromosome variation that has been part of a group of similar conditions that have gotten a “very bad rap” for a very long time. I am the point of contact for our organization when parents are considering termination.
While I did find the quote mentioned above offensive as well, the real controversy lies in expectant parents not receiving realistic, correct, information to make a decision about termination. I think the autism community has more “good rap” than our community has “bad rap” and that the public is fairly well informed about the positive sides of autism.
The real issue is about whether or not a parent is equipped to provide all that would be necessary to raise a child on a spectrum such as this. This is another issue I, too, deal with as my son’s condition has a spectrum.
In the end, people must have all the most up-to-date information about a condition to make these decisions — not some “Rain Man” movie or (as has been in our case) prison studies that have been discredited. This is going to be a losing battle now that this genie is out of the bottle — so it will be time to then make sure the public gets the “good side” as well. The rest is up to their beliefs, etc.
January 12th, 2009 at 6:52 pm
This is outragous! Prenatal screening for autism — next it will be because the child is blind or deaf! It is bad enough that children with Down syndrome are terminated at a record 90% but now to actually say that some how even autism is better than DS. Give me a break!
I know three kids with autism and let me tell you, I’d take DS any day over autism. I thank God every day that i did not know my daughter had DS prior to her birth. Personally i think my daughter with DS is pretty darn smart and she has a great talent of engaging everyone she meets, so I guess she is “gifted” too.
January 12th, 2009 at 5:03 pm
I’m afraid that in this case, the Down syndrome community’s collective outrage is only as useful as their willingness to act. While autism is approaching a crossroads (i.e. how to inform the public), the majority of people testing prenatally already terminate fetuses with Down syndrome.
The two communities may engage in the same conversation with doctors, patients, and the public at this time; however, the patients — and the public by extension — have already established the common attitude and course of action for prenatally diagnosed Down syndrome.
I feel the Down syndrome community stands to lose ground if the reaction to testing is any action that further distances the public, let alone doctors and researchers.
January 12th, 2009 at 3:04 pm
Could we be any more offensive? It’s OK to terminate for Down syndrome, but we might eliminate some smart people if we start on autism? I have four children, one has Down syndrome, and of the three others one is very gifted. They are both loving, happy, wonderful people who bring so much to the world. I’m glad I chose to give birth to them.
January 12th, 2009 at 1:00 pm
The article states: “There is a test for Down’s syndrome [sic] and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition.”
Talent?!? Is that the demarcation line on the termination issue? That’s a statement with divisive and frightening possibilities.