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torstai 15. tammikuuta 2009

Autismin testaus ennen syntymää?

Cambridgen ylioopiston autismin tutkimuskeskuksen mukaan autismin ja raskauden aikaisen testosteroni tason välillä on löydetty yhteys. Tämä saattaa helpottaa mahdollisen autismin toteamiseta jo ennen lapsen syntymää.

Tutkimuksen johtaja professori Simon Baron-Cohen toteaa, että autismi ei kuitenkaan ole mikään syopä, jonka takia lapsi pitäisi abortoida, vaan tietoa lapsen mahdollisesta autismista tulisi käyttää lapsen kasvatuksen hyväksi. Autismi on sosiaalinen haaste, eikä sinänsä lääketieteellinen ongelma.

- Ennen syntymää tehtävästä diagnoosista saattaa olla jopa enemmän haittaa, kuin hyötyä, sillä tämä saattaa johtaa eugeniseen valintaan, jossa sikö, jolle voi kehittyä autismi, abortoidaan. Tämä merkitsee syrjintää neurologisesti epätyypillisisiä ihmisiä kohtaan.
- Jotkut vanhemmat saattavat päätyä aborttiin, koska uskovat, että lapsi ei tule saamaan hyvää elämää, vaikka autistinen ihminen yleensä sopeutuu hyvin ja antaa arvokkaan panoksen yhteiskunnan kehitykseen.
- Autismin geenit yhdistetään myös lahjakkuuteen, eikä vain musikaaliseen tai taiteelliseen lahjakkuuteen. Niilläkin, joilla on oppimisvaikeuksia, on usein hyvä muisti, kyky havaita yksityiskohtia ja säännönmukaisuuksia, pitkäjännitteisyyttä tai muuta aistiherkkyyttä.
- Autismin geenien hävittämien saattaa merkitä myös ihmiskunnan harvinaisten ja arvokkaiden kykyjen hävittämistä.

1 kommentti:

Anonyymi kirjoitti...

The potential for genius should not stop autism screening

THE prospect of a screening test on a pregnant woman predicting her child's autism is not far away, and Professor Simon Baron-Cohen, leader of the Cambridge University research team that developed the test, has called for an ethical debate on its desirability. My first reaction was puzzlement.

Why a debate? We have had the test for Down syndrome for many years. It seems to be generally accepted without controversy. No expectant mothers are obliged to have it, and many, even those at some risk because of their age, choose not to. Those who do take it have the choice, if it proves positive for Down, between terminating the pregnancy or bearing the child. It is, of course, an agonising decision, but I'm not sure it raises special ethical issues.

Why should the autism test be treated differently? It is a different kind of condition, says Professor Baron-Cohen, often linked with talent. "What would we lose if children with autistic spectrum disorder were eliminated from the population?" It is a philosophical question, which stakes the claim of society to be involved in the debate, and not just the parents of the unborn child.

I don't normally like to use the slippery-slope argument, but it is apposite for issues arising from the bewildering speed of medical advances. Screening for Down syndrome has become commonplace; a test for autism is imminent. There is no doubt that more and more tests will be found for more and more conditions, many of them far less life-threatening or seriously affecting quality of life than the ones we now give priority to. Where would we stop in offering pregnant women tests?

Or are we prepared to accept, or even welcome, a less diverse society that has rid itself of autistic children and, in time, of sufferers from other conditions difficult to cope with by the sufferer, his or her immediate entourage, or the medical profession? It's a sustainable argument that losing the tiny proportion of the population made up of autistic children will not have much effect on diversity; but the slippery slope results in many other potentially sick children not being born.

What I cannot accept is the argument put forward on behalf of autism alone, and no other condition — that among those autistic children not born, because their mothers had the test and decided to terminate, there might be brilliant autistic savants who would make an important contribution to society.

It is being asserted — I have yet to see any supporting evidence — that Albert Einstein and Isaac Newton were autistic; their mothers, in modern circumstances, might not have had them. The logical corollary of that approach is to refuse to offer the test to all pregnant women, just in case they were in danger of bearing an autistic child who would be among the exceptionally gifted 1 per cent or 2 per cent.

If we take up Baron-Cohen's call for a debate, we will have to decide between three elements: the autistic person's predicted quality of life (though the test may not be that precise); the feelings of the parents who may suffer far more than their child; and the view of society as to its diminished diversity if we continue to prevent the birth of the imperfect. The last should be the least listened to.