Prenatal Autism Screening: What IS the ethical debate?

The prospect of a prenatal test for autism has recently been much discussed in the media. Professor Simon Baron-Cohen, a leading expert on autism, has called for a debate about the ethics of prenatal screening for autism, and what the consequences for society might be.

The Professor is right: it is essential to debate the ethical consequences of developing a prenatal test for autism before we actually develop one. Not because the outcome of such a debate would in any way, shape or form prevent scientists from developing and using a test (let’s not be silly) but forewarned is forearmed, as the proponents of ever-more prenatal testing tell us; if a prenatal test for autism is scientifically possible it will be developed and used so we may as well get on with the arguments.

But am I the only one who feels distinctly uncomfortable with the way that this debate about the ethics of prenatal autism screening (by definition screening out, unless an in utero cure/treatment for autism is developed, which is a long way off and which, especially for people with autism, leads to a whole new set of ethical questions) is being played out in the public arena?

The question in the papers and on TV and Radio has been, more or less: what would happen if, in screening out autism, we screened out the genes for mathematical ability and abstract thinking that are so often associated with it? The test, we are told, would be unable to distinguish between high-functioning autism/Asperger syndrome and more profound varieties. Are we, as a society, prepared to accept the loss of potentially high-functioning people, including scientists and inventors, as the price to pay for screening out autism, and what are the consequences for the gene pool? “Imagine a world with no Einstein, Newton or Bill Gates” has become the buzz phrase. Here is one example: The Times, 12/01/2009, “If we screen out autism we run the risk of losing genius too.”

Whoa, easy there cowboy! That is not the ethical argument – that is a 100%, cold-blooded, profit-and-loss argument. It highlights a potential consequence, but ethics feature nowhere in it UNLESS, and here is the crucial and dangerous bit, you accept as a given the eugenicists’ guiding and fundamental principle that terminating useful people is ethically different from terminating those considered less valuable. Usually the argument for prenatal screening followed by termination is individual quality of life; not in this case. As Professor Baron-Cohen told The Guardian:

"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? 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."

So it is ethically fine to terminate people with Down’s syndrome, because they have no talent, but if we terminate people with autism we might lose useful people?

To be fair to Professor Baron-Cohen, he is intentionally highlighting exactly the point I am attempting to raise – that to accept that someone’s possession of a certain talent has a bearing on the ethics of terminating them is to buy into the logic of eugenics – and I do not believe he meant to imply that there is no ethical dilemma around termination for Down’s syndrome.

But that particular quote highlights the danger that those of us opposed to screening out disabled people face. It is tempting in the extreme for us to use this argument to highlight the dangers of embryo screening – that humanity could suffer by screening out useful traits with the bad; throwing the genetic baby out with the bath water, to coin a phrase. But it is a convenient and seductive honey-trap that distracts attention from the real ethical question in prenatal screening, namely is it ethical to use a subjective and speculative medical-model assessment of the value and quality of someone's life as grounds for abortion?

If we go along with the argument that the ethical dilemma in prenatal autism screening is the possible termination of socially valuable people along with the others, then the result will be that the eugenicists have won by default, because in doing so we will begin to acknowledge that some disabled people are more valuable than others.

So by all means point out what society potentially has to lose by screening out people with disabilities, but don’t let people get away with claiming that this is the ethical dilemma in prenatal screening. If this becomes the public focus of the debate then any discussion of the actual ethics of terminating disabled people will have been smothered and suppressed, to the great benefit of those who advocate automatic termination on the grounds of disability.

A little Einstein or Newton or Bill Gates has no more right to be born, to be happy, and to be valued as a human being than a little person with more profound autism or Down’s syndrome or any other disability. In their essential humanity they are one and the same, and if we ever lose sight of that then those who seek to divide the human species into the useful and the useless, those who have a right to exist and those who don’t, will have won an easy victory.

The Perils of Overcomplicating - the Government and the UN Convention on the Rights of Persons with Disabilities

I was playing snooker recently. I had various options for my next shot, none of which was particularly appealing. I could take the long red, but could easily miss, which would leave my opponent with a possible red from which he could get on to a colour. There was a short pot at a tricky angle. This was also missable, it would open up the pack, there was no guarantee I’d be on a colour, and I could leave my opponent on. He could then get onto a colour and the reds would be available.

I stood pondering while my opponent checked his watch, visited the lavatory, and bought a pint. I was thinking multiple shots ahead, running through a bewildering array of scenarios and what-ifs: I had overcomplicated the problem to the point where I was frozen by indecision. I had lost sight of the long-term game plan (winning), and was so overwhelmed by details and fears that I had failed to spot an easy safety shot: simple, effective, in line with the game plan.

To anyone who has followed the Government’s progress on the UN Convention on the Rights of Persons with Disabilities, this scenario will be depressingly familiar. The British Government, which already has some of the world’s most comprehensive disability equality legislation, has missed its own deadline to ratify this Convention, much to the chagrin of the disability movement. It has proposed more reservations and declarations than the other 43 countries who have already ratified combined, on defence, on immigration, on education, largely to counter the fears of its own civil servants as to the effects of the legislation. Amidst these worries about miscellaneous legal and bureaucratic complications it has lost sight of the bigger picture, and now seems like a rabbit frozen in headlights.

The Ministry of Defence wants reservations, even though the idea that equality legislation meant immediately forming the 1st Battalion, the Power Chair Regiment was debunked years ago. The Department for Children, Schools and Families wants reservations on education, to preserve Special Schools, despite already being committed to inclusive education. Granted the immediate abolition of Special Schools would be a disaster and parents should be allowed a say in how their children are educated (education is more important than ideology; if 60 years of disastrous political meddling with education has taught us anything it should be that). But the Convention does not suggest immediate abolition. The Convention sets a goal, inclusive education, which we all agree is a valid goal, and allows time to make that happen properly, without rushing things; Progressive Realization are the key words here. The Home Office wants reservations on Immigration for public health reasons, even though it’s doubtful whether anyone at the Home Office was even born the last time someone was refused entry to the UK on the grounds of disability.

Rather than excessively worrying about the details of implementation, the Government would do well to remember what the UN Convention symbolises, and what it is meant to achieve in the long run. Britain’s dithering on this matter sends worrying messages to other countries and to disabled people, who will be wondering why we find it so difficult to ratify a Convention which states what successive Governments are supposed to already believe; that disabled people are full and equal citizens with equal rights to inclusion and self-determination. It’s really not that complicated.