Pages Menu
TwitterRss
Categories Menu

Posted by on Mar 7, 2013 in Ethics | 5 comments

Down Syndrome and Prenatal Screening

 

Russell Blackford on The Hellfire Club has drawn our attention to calls for a professor of bioethics to resign on account of his views on screening for Down syndrome in the womb.

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.

 

Negative Stereotypes

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.

 

Discriminatory Terminations

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.

 

  • DrewHardies

    The position on ‘Saving Downs’ has some horrific implications.

    It’s describing people’s “value” as a function of their groups population. If a smaller group ‘devalues’ then a larger group would increase individuals’ worth.

    If we accepted this logic, we’d have to accept a moral imperative to maintain some number of disabled people, regardless of future medical advances or therapies.

  • http://skepticink.com/notung Notung

    Yes, I’d never heard that argument before – and it’s a strange one!

  • Peter White

    This reminds me of what happened when cochlear implants became available for deaf children. Many of the parents refused to consider getting the implants because that implied that there was something wrong with their children. As far as the parents were concerned the children were perfectly fine and didn’t need to be ‘fixed’.

  • Chas Stewart

    This policing of language is very interesting because I had never thought of it extending to “disability” but it makes sense why people would eventually see this as a slippery slope. It reminds me of the Chagnon affair where the Yanomami (or Yanomamo) tribal leaders rebuke the notion that they are fierce people because they believe that it gave rhetorical power to colonialists who have annexed their lands and destroyed their habitat with rampant mining excavations. But I think that it’s unfair to blame the people who are studying these fields and making conclusions but had no evil or ulterior motive and had never intended for their research or opinions to cause devastation (I also don’t think there’s conclusive evidence that Venezuela would have refrained from annexing tribal lands if Chagnon had never studied and written about them).

  • Clare45

    I know there are a lot of delightful DS children and adults, but these are usually the milder examples. Some are so severely disabled that they have to be institutionalized or have to have expensive medical and nursing care for the rest of their relatively short lives. And what happens to them if their parents and caregivers die before they do? I agree with the professor. I am a little surprised by the reaction to his comments as I thought that most older expectant mothers- over the age of 35 I think, but certainly over 40- had amniotic fluid testing for DS in the foetus, and then could make the decision whether to abort or not.