Researchers in Australia are currently trying to develop a prenatal screening test for autism.
People keep trying to tell me this is not happening.
They are studying the fetal development of the siblings of autistic children in hopes of finding a prenatal test:
The world-first foetal brain measurements - in 100 pregnancies where there was an older autistic child and 100 controls where siblings developed normally - could be used to track retrospectively any link between growth patterns and a later autism diagnosis.
The doctor working on the test doesn't think it will ever work very well and he's concerned about the ethics of it, but he's still doing it:
Andrew Whitehouse, who heads the autism and related disorders program at the Telethon Institute of Child Health Research in Perth, said there would probably never be a cast-iron diagnostic test during pregnancy for autism like those available for Down syndrome. Instead, a test would only point to an elevated risk of autism, but some people might still use it to decide whether to continue a pregnancy.
''These are factors we need to start discussing out in the open,'' said Professor Whitehouse, who will present the continuing project at an Autism Queensland symposium at Bond University on Thursday. ''It's a broader debate that we'd like to see happen.''
There was ''a critical period between eight and 24 weeks of pregnancy when we think brain development goes off course'', he said.
Three crucial points:
1. This is not hysterical paranoia. It is not science fiction. The use of prenatal screening to attempt to remove the autistic population before we are born is being studied in the United States as well. People who claim this is not a legitimate or pressing ethical concern are either misinformed or dishonest.
2. The fact that these tests are unlikely to be very effective does not mean they will not be enthusiastically embraced. No one thinks taking off your shoes at the airport really prevents terrorism, but the problem is so serious that people are willing to suffer through ineffective solutions. People have been taught that a child with autism is a horrible, life-destroying fate. The general public has been educated on how much we cost.
3. Please immediately reject the bright, happy face they are trying to put on this. Sure. A mom who already has an autistic kid wants this information so that she can start treatment earlier if her daughter also has autism:
''If they could [diagnose autism prenatally], I would want to know that,'' said Mrs O'Neill, of Perth. ''I'd want to be prepared to help her as soon as she's in the world.''
She knows her life has not been destroyed. I'm not doubting her sincerity.
But there is no way to limit testing like this to people who already have autistic kids.
Most people will just know what they've been told on TV.
The fact that some parents may use this information in a positive way must not be allowed to become a smokescreen for the fact that the primary use of this technology will be eugenic.
Last week I wrote about my fears regarding prenatal screening for autism and was assured that no such thing is even close to happening.
But the New York Times reported yesterday that microarray testing, which analyzes fetal cells with a DNA-sensing chip, is being studied now for exactly that purpose, among others:
The study, which is expected to be published in a peer-reviewed medical journal soon, found that the new technique, microarray, surpassed standard testing in detecting chromosomal abnormalities that can cause problems likeor .
There is substantial concern that this information will cause parents to abort fetuses which show harmless irregularities:
Microarrays are already the standard diagnostic procedure after children are born with mental disabilities. But until now, there has been reluctance to use the technique prenatally, because errors or unclear results might lead to stress and unnecessary abortions.
“If you make a mistake in postnatal care, you still have a child,” said Lisa G. Shaffer, chief scientific officer for molecular diagnostics at PerkinElmer, which owns Signature Genomic Laboratories. “If you make a mistake in prenatal care, it could lead to a family making a wrong decision.”
However, some scientists doing the research think getting rid of people they consider defective is much more important:
“There definitely are complicated things you run into,” said Dr. Arthur L. Beaudet, chairman of molecular and human genetics at Baylor College of Medicine, which offers microarray testing through its laboratory. “But in order to avoid that, are you willing to give up detection of clear-cut terrible disorders?”
Warning: This starts out with ideas that are hard to think about, and gets harder. Brutally honest, even for me, but the only way I can say things that need to be said.
Two stories in today's news have me worried about the issue of prenatal testing and autism.
1. A blood test which is claimed to identify Downs syndrome 95% of the time has been approved for sale in Switzerland, despite the objections raised at the European Court of Human Rights by the international federation of Down's syndrome organizations:
The federation, grouping 30 associations in 16 countries, said in June that the Strasbourg court should 'recognise the human condition and protect the right to life of people with Down's syndrome and those handicapped'.
2. Mark Leach claims that our popular media are leading us down a path toward "A Eugenics Common Sense":
In his recent column for Slate—headlined “Fetal Flaw”—Will Saletan praised the advances in prenatal testing for informing mothers if they are pregnant with a “defective fetus.” Saletan used the new tests as a wedge in abortion politics. Citing various polls, he argued that it will be difficult for pro-lifers to persuade a majority to be opposed to this new testing, even though Saletan rightly expects that the numbers of abortions will increase. Because it would be difficult to enforce any prohibition against aborting for specific reasons—such as the recent attempt by the House of Representatives to make sex-selective abortion illegal—Saletan almost gloats that the new tests will allow for even more eugenic abortions, i.e., abortions due to the fetus’s genetic make-up.
A month before Saletan’s article, Newsweek reported on the “epidemic of special needs kids.” As the charged word “epidemic” suggested, the article discussed the growing burden of caring for more children with autism and Down syndrome because of the costs of medical care. Almost lamentably, the article notes that these burdens have been somewhat compounded because, due to societal advances in medical care and inclusion in mainstream society, individuals with intellectual and developmental disabilities are now enjoying longer—and therefore costlier—lives.
Burden. Defective. Epidemic. These were terms commonly used in the eugenics era at the turn of the last century to justify compulsory sterilizations and involuntary euthanasia. But raise concerns at the turn of this century over prenatal genetic testing, and, as Mr. Saletan shows, the critics will be dismissed for simply being Luddites, against the advances of technology in the information age. What Mr. Saletan and other proponents of prenatal genetic testing ignore is that while technology may be value-neutral, how it is administered is not.
I have known that I needed to write about this issue for some time, but I did not realize exactly why it is so painful for me to do so until the last couple of days.
Part of the reason, of course, that this is so painful for me, is the likelihood that I would have been aborted myself had a similar test that identified autism been available to my parents. And probably the most painful thing about that is that I have mixed feelings about it. My life, which has been pretty functional by autistic standards, has so been so painful for me and so expensive for others that I'm not sure ending it before birth would have been a bad idea.
Some people will be angry at me, maybe even accuse me of encouraging genocide by saying that. But all I have to offer you that can ultimately be of any value is my truth, and this is part of it.
And it's not even the hardest part.
One of the most troubling issues related to autism research is the likelihood that some of it will be used to create prenatal tests that may result in fetuses being aborted if they show a likelihood of developing autism. Neuroskeptic imagines a couple who pay for a test that uses de novo mutations in this way:
A few days later the results are back. There are several mismatches detected. Most are benign - they're not predicted to have any biological effects. But there's one, a deletion of a few thousand bases in a gene involved in brain development. This deletion is predicted to raise the risk of epilepsy and autism from 1% to 10% apiece.
The parents now have a decision to make. The mutation is a one off, it's not inherited. If they conceive again... roll the dice again... and it'll be gone. Do they terminate?
Like the adverts say, "Some people disagree with this, but we say there's only one person who really matters: your baby."
This is an issue that is not going away. These tests may end up being very inaccurate, but I think they will happen. And what you think about them might end up mattering a lot.