A recent
post by Leg-Iron, on the subject of those who feel threatened by the cures proposed by (among other things) genetic screening prompted a lot of debate and a
follow-up post, where the point was made that we
need the check on the rate of progress that the ‘placard-wavers’ provide:
“Stick to highlighting what you see as immoral, even if the rest of us don’t agree. There might well come a time when the rest of us will think ‘Wait a minute. This time, they have a point’.”
Well, get ready for the
next battlefield, and it’ll be interesting to see how the lines form up:
New research published today will bring prenatal testing for autism significantly closer, prompting experts to call for a national debate about the consequences of screening for the disorder in the womb and allowing women to terminate babies with the condition.
And why might this provide those ‘experts’ with a better reason than usual to bewail the march of progress?
Because it directly threatens
them, and not just their jobs:
Enabling couples to terminate the pregnancy if an autistic disorder is detected is highly controversial. Autism is a spectrum disorder, which famously includes mathematical and musical savants as well as children who are unable to communicate and spend their lives in an institution.
Hmm, aren’t noted scientists and media pontificators often claiming that they (and other historical figures) sit within the ‘autistic spectrum’?
Why, yes,
it seems they are. And that throws up some issues for the ‘experts’:
Parents of children with autistic spectrum disorders are particularly strongly opposed to testing linked to termination and fear it would lead to greater discrimination and less support for them.
Professor Simon Baron-Cohen, director of the research team, told the Guardian that it is now time to start considering where society stands on the issue.
"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?" he said. "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."
Yes, indeed it is. And there will now be an almighty hoo-ha in the scientific world over the possibility of reducing numbers of autistic spectrum-affected children:
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 pre-natal treatment. There are drugs that block testosterone. But whether we'd want to would be a different matter."
Why not leave it up to the parents to decide that? It is, after all, their decision, just as the decision to abort any other potentially damaged child should be – they, after all, are the ones who have to live with (and cope with) the consequences?
Naturally, the various charities, trusts and organisations are sounding warnings as they perceive their jobs potentially under threat:
The National Autistic Society says some of its members think a test to predict autism could be useful in helping parents prepare and get support for their child. At the moment, many children are not diagnosed for two or three years, which is a source of frustration. But none have said they wished it had been possible to have a termination.
"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 NAS. "There could be some real gains in recognising 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."
‘Give us more money and you too can ignore reality’…
On the other hand, there
are those who can see the other side – again, on behalf of ‘society’:
Vivienne Nathanson, head of ethics at the British Medical Association, agreed a debate was needed. "The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?" she said.
If you can (potentially) treat it and either alleviate it or eliminate, why not…?
Why does the medical profession push for preventative action like
the inclusion of folic acid into everyone’s foodstuffs, if not to prevent exactly this kind of outcome?
And if it does turn out to be preventable, then the other kind of ‘public good’ advocates will be waiting in the wings to trumpet the ‘cost to society’ if people refuse:
The more complicated ethical issue would be that of treatment in the womb, she said. "You get to the situation where you have a very great difficulty if families say we wouldn't want to be tested. As a society, do we accept that people can refuse tests when the outcome can make a difference to that unborn child?"
It’s a minefield, indeed…