DNA testing for autism opens doors to selective abortions

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A medical Pandora's box - Calgary Herald - 13 Jan.08
DNA testing for autism opens doors to selective abortions

Medical advancements hailed as long-awaited breakthroughs often come with a sobering ethical flip side. Also, all too often, the advancements come before the debate on their accompanying ethics has begun.

Researchers at the Autism Consortium in Boston, as well as at Toronto's Hospital for Sick Children, have located a chromosomal link to autism that could lead to genetic testing for the disorder.

The Boston group found that children with a duplicated or missing segment of chromosome 16, which appears to control certain brain functions, have a risk for autism 100 times greater than normal. The Toronto researchers plan to offer DNA testing as soon as they can.

While a DNA test done on a newborn baby would be of tremendous benefit in obtaining early intervention and therapy for the child, thus fostering a much better outcome, the test could also determine if a fetus is affected. That opens up a Pandora's box of potential for selective abortion of these fetuses.

Autism is not just one condition; it is a wide gamut of them, with not only a broad range of symptoms of communications and social dysfunctions, but within that range of symptoms, there are also wide degrees of impairment.

At the higher functioning end of the autism spectrum are individuals with Asperger's syndrome and, while they often suffer various social impairments, they are usually highly intelligent and productive people. For example, some scientists think that Mozart's unsurpassed musical genius was an indication that he may have been autistic.

The danger with a prenatal test is that it will create a situation in which the value of an individual's life will be determined based on assumptions about his or her cognitive functions.

It is not just that future Mozarts could be terminated, but that the value of any person lies in his or her intrinsic humanity, not in gradations of intellectual ability or chromosomal misfirings.

The richness and joy that an individual brings to his or her family, friends and the larger world are measured not by intelligence levels, cognitive disabilities or any other limitation. The only thing that counts is the uniqueness of that person, made up of all the traits and qualities that have never been found in any other human in just such a combination.

The runaway pace of medical technology will force us to decide what kind of society we want -- one where each individual has inviolable value, or one where the vulnerable who are most in need of our care and concern are weeded out because we can't see past their "defects" to the person beneath.

The debate can be put off no longer.
© The Calgary Herald 2008

More links below:
11 January 2008
Moving 2 Steps Closer To Understanding The Genetic Underpinnings Of Autism
New Genetic Link To Autism Identified
Autism Risk Higher In People With Gene Variant
Scientists Identify New Genetic Link To Autism
10 January 2008
Some Autism Linked To Missing Or Duplicated Chromosome Segment
Novel Chromosome Abnormality Appears To Increase Risk Of Autism
Neurobiology Of Autistic Spectrum Disorder
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My Comment:
Am I concerned that one day the Aspie community may not exists, of course it worries me greatly that the NTs in there search for perfection may even stop evolution in its tracks!

When I had children myself, as it was later in life was ask to do various test, some involved risk to my child and I'm happy to say I did not go ahead with test, but was nearly tempted. I think what helped me was having close friends with various disibilities who are amazing people and when I it really came to doing some test, even got as far as the hospital I thought of them and could not do it.

I'm now great full for that, as in years to come I could also be the one they want to eliminate from this world..

I could see them testing for LFA but not Aspergers.

Besides it would be a poorer world without aspies.

How very sad.

That makes me angry.

These are beautifully written paragraphs. It is not only the savants that would be missed, but all sorts of autistic people with sweet, kind personality traits.

It's an inevitable consequence of letting NT's play with things... what they cannot understand they must destroy.

The same genes can cause both (as if they're really these two enormously separate ideas in the first place) in some cases. That's the difference between genotype and phenotype.

For instance, Rett's is usually caused by a particular mutation. There are people with that mutation who have severe Rett's (which looks like "LFA"). And there are people with that same mutation who have what looks like "Asperger's" or "HFA". The mutation is the genotype, that various different ways it expresses itself in the way the person functions and such, are the different phenotypes.

But, frankly, my emotional response to the idea of weeding out some autistic people over others, is I'd rather all of us were weeded out rather than some kind of elitist thing where only "high functioning" people were worth existing. But, really, I'd rather none of us were weeded out at all (nor the huge number of people with conditions like just albinism who are weeded out as if they're not perfect enough). I think a world without any particular sort (real or imaginary divisions of sort, of course) of person weeded out because of eugenic policies and widespread prejudice and so forth, is a problem.

And I don't think we do anything towards alleviating that prejudice by going "We're okay, but those people over there? They're not okay and shouldn't be here."

Sounds familiar... Who has seen Gattaca ?

There is no gene for the Human Spirit

No one listens to me. I've been saying this all along. It's all fine and dandy as long as we limit it to early intervention, but as soon as you start gettin into the eliminating the concept entirely bit, it's disgusting. We don't need anyone deciding what kind of people should be allowed to exist and which ones shouldn't. No one should have that much power. Very frightening.

Despite all this there's only so many people who would actually design the perfect child if they were able to. I'm guessing most autistics wouldn't have this done for their children, just as most deaf would not have it done for their children, plus all the people who are religious and don't want to interfere with "god's" plans or those who think its' unnatural. I wouldn't want my children to have down's syndrome, for example, but at the same time I have a big problem morally with selecting one child to be over another. My whole life I would be wondering...who was the child that I gave up in place of this perfect one?

I don't think that disabled children are "less perfect" than non-disabled one, for one thing. And I also have a real problem with the idea of selecting for anyone (yes, including the things most people make exceptions for -- I would not, I would give even an extremely short-lived baby a chance and do everything possible to make their life good, unless I would die in the process of having them).

However, the reality is, most people do select against anyone who's even a little different if it can be detected on the standard test. There are a number of reasons for that. Many have to do with prejudice ingrained in the parent (and in most people in general, including disabled ones for that matter). But some have to do with pressure from other people. People I know who have chosen to have disabled kids after it was known... people told them they were nasty, cruel, evil people, OB-GYNs told them they were awful and irresponsible, etc. There was a news woman who had a very minor thing that made her hands look a little different, and when she had a child (the condition is genetic) a huge part of the world called her irresponsible. There is enormous social pressure to abort and most people don't know enough about disabled people (including the fact that we consistently rate our quality of life as equal to non-disabled people, but doctors rate it much lower, and this is even people with pretty bad diseases requiring invasive treatments and stuff) not to succumb to it.

Actually, in the deaf culture many people are very anti cochlear implants because they don't want the deaf culture altered. It's a very strange little bubble.

I am torn on the issue. Women have abortions for all kinds of reasons, some which I might deem lame or unethical, but being pro-choice means that you leave the choice of continuing the pregnancy or not up to the individual woman, even if you think she is incompetent to make such a monumental decision.

Having been through genetic counseling myself, I can tell you that these people paint the worst possible picture for any disorder. I think the real target should not be whether or not these tests are made available, but how the parents are counseled concerning the disorders. So our focus should be on what happens after the tests in terms of counseling and information provided by the doctors and genetic counselors, not on the tests or research, per se.

I'm deeply disturbed by that.

I know, that's what I said.

Sorry, feelgoodlost, I was distracted and misread your post. I stand corrected and you stand correct!