Down Syndrome and Prenatal Screening
Russell’s main claim in his post is a fairly weak one – whatever your views on this, we should not call for the resignation of academics because of their professional opinions, especially when those opinions are considered respectable by their peers. I agree with that wholeheartedly, but I wanted to offer some of my own (poorly-researched) thoughts on this rather sensitive issue.
The main charge against the professor, Gareth Jones seems to be this:
He [Jones] is reported here as saying:
”For some families, raising a child with Down syndrome will be immensely difficult, and it is for this reason that we allow the option of termination.”
These statements are false. Children with Down syndrome live good lives and are loved and valued members of their families. Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice.
Jones’ claim in the quoted passage is that raising a child with DS might be difficult, not that it necessarily will be. So his view is compatible with the view that many children with DS lead happy, worthwhile lives. However, might the view that raising a child with DS can be “immensely difficult” be discriminatory? I don’t think that it is, at least not on its own. If considered a disability, then we must think about how we think about other disabilities. Do we discriminate against the blind by calling blindness a disability? Many blind people lead happy and fulfilling lives, after all. Is paraplegia a disability? I don’t think that saying that it is a disability ‘reinforces negative stereotypes towards them’. Recognising a disability in another is no grounds for holding that person in lower regard than the able-bodied.
In fact, I’m slightly puzzled by the view that calling condition C a ‘disadvantage’ or a ‘disability’ should lead to a negative view of people who have C. It strikes me as disrespectful to people suffering from conditions other than C that we regularly call disabilities – their disability is irrelevant to how much we value and respect them.
A slightly trickier issue is the question regarding prenatal screening with a view to early termination in cases of Down syndrome. From the same site:
Professor Jones acknowledges that “prenatal testing may result in fewer people with Down syndrome”and then attempts to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.
I don’t think it’s plausible at all to suppose that fewer children born with DS devalues the lives of those with the condition. What possible grounds are there for supposing this? Perhaps familiarity with a condition as a result of its prevalence somehow causes us to be more accepting of it. Take a Tourette’s suffer who is asked to be quiet, for instance. Those who know about the condition would know better than to make such a request. So (our argument goes) the more Tourette’s sufferers around, the more people will know about the condition, and so there are less likely to be situations where a Tourette’s sufferer is asked to be quiet. That’s all very well. But where do we go from there? Suppose some can be relieved of the condition, should we withhold the cure so that we don’t alienate those who cannot be cured of it?
My point is this: while such screening is likely to result in fewer children with DS being born; that is no reason to deny the screenings to prospective mothers. Whatever your opinion whether DS is a disability or not (and there does seem to be a subjective component in this judgement), there is no justification that I can think of for deliberately maintaining the number of children being born with DS merely to make life more comfortable for the other children with DS (if indeed it does at all).
So my view is this: we should offer prenatal screening for DS for those who want it. That isn’t immoral or discriminatory – nobody is being forced to do it, and those who object to it don’t even need to entertain the idea for themselves. Furthermore (and this idea is entirely consistent with the other) we ought to value and respect all people with Down syndrome. If you disagree with this then that’s absolutely fine – it’s an important issue and it should be discussed openly, civilly and rigorously. Nobody should lose their job for being on one side or the other.