Some thoughts on prenatal screening and disability (part 1/3)

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I’ve been wondering over the past few days if there’s any point adding my penny’s’worth to the furore around the Cole-Jones paper on prenatal screening and Down’s Syndrome.  For one thing, the incident has been extensively discussed around the blogosphere already.

More than that, I’ve entertained serious doubts about the usefulness of trying to salvage anything from the whole unfortunate business. For those who don’t know, the matter began with the publication of a paper in the New Zealand Medical Journal by Robert Cole and Gareth Jones. The paper, entitled ‘Testing times: do new prenatal tests signal the end of Down syndrome?’, dealt with Non-Invasive Prenatal Diagnosis’ (NIPD), a new way of testing fetuses for Down’s Syndrome ‘which enables diagnosis earlier in pregnancy with less risk of complications.’

The publication came to the attention of the campaign group Saving Downs, who responded not only by criticising the paper’s content, but by calling for the resignation of Gareth Jones. (The matter appears to have been somewhat complicated by confusion – now clarified – as to Prof Jones’s current role, and by the erroneous attribution to him of views expressed by entirely a different Gareth Jones.)

Much of the attention generated by Saving Downs’ press release concerned the call for resignation. Bloggers pretty much put on a united show of opposition to this aspect of Saving Downs’ protest. (See, in particular, the posts from Russell Blackford, Udo Schuklenk and Tauriq Moosa.) This, I think, was understandable, even commendable. And it was this aspect of the issue that has made me somewhat reluctant to say any more about it. Is there any point in trying to debate with people who, if I say (what they consider to be) the wrong thing, will respond by trying to trash my career? Somehow, that hardly sounds like an ideal setting for a full and honest exchange of views.

But important though the ‘academic freedom’* issue actually is, it would be a shame if it completely eclipsed the substantive questions around which the dispute revolved.They are, it can’t be denied, really important questions. Over the past dozen or so years, I’ve researched and written and talked quite a lot about reproductive choices, and about their possible impact on disabled people or their families. The result of that research and those engagements has been that I’ve sharpened my opinions on some things, changed them on others, and been left really uncertain as to what to think about a fair bit.

Sometimes that has involved listening to opinions that I’ve found absurd, frustrating, even offensive. Sometimes it has involved me saying things that others found that way. As Kurt Vonnegut would have said, so it goes. There are some subjects where it is just impossible to express any opinion without risking offence to someone. Disability is one, abortion another. Put them together, and … well, consider the blue touch-paper well and truly lit. But while the risk of causing offence is a good reason to choose our words carefully, it really cannot be a reason to avoid these issues altogether, nor to allow the range of possible approaches to them to be overly curtailed. Clearly, our society needs some sort of policy relating to these matters. And since literally every policy suggestion will be offensive to someone, offensiveness alone cannot be reason enough to exclude certain perspectives or opinions.

(Should there be any limit to the range of opinions that we should tolerate around the table? This is maybe something I’ll revisit in later posts.)

I should also note that, having (with some trepidation) engaged with some of the SD members/supporters on Russell Blackford’s blog, I have a suspicion that at least some of them aren’t averse to the idea of a proper, grown-up discussion about their concerns. I’ve no idea why they went about things in the unfortunate way they did – perhaps they thought it was the only way to get listened to – but their perspectives are valid and valuable and, provided they can express them with a modicum of civility, I’d welcome them on this blog.

To do this issue justice is going to take quite a lot of words, so I’ll be splitting my thoughts here into several posts. Stay tuned if interested.

* I’m actually somewhat suspicious of the concept of ‘academic freedom’ in this context, as it isn’t obvious that, or why, academics should have any more sacred right to speak frankly and explore ideas than anyone else. My view is more that we should all be free to explore and examine, propose and challenge ideas and practices. The more important the practice, the more important the freedom to do so. And yes, before anyone points it out, calling for Prof Jones’ resignation is itself an expression of opinion, and one that should be protected. It’s just not a terribly productive example of the species.

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3 thoughts on “Some thoughts on prenatal screening and disability (part 1/3)

  1. Well, clearly I spoke too soon . SavingDowns have clearly decided that eye-catching stunts rather than meaningful dialogue is the way forward. This is a pity, but I’m inclined to press on regardless, on the assumption that someone, somewhere, is actually interested in (hopefully) constructive discussion.

  2. Nice post Colin. One thing I wondered about both in regards to this case and the post-birth abortion case was whether there was a sense that these sensationalist tactics actually are quite effective – and whether complaining about them as academics do (ie there is something suspicious about a view that people won’t defend in an academic debate but instead make these sorts of moves) is really legitimate.

    My worry is that this protest from academics is the same as the commentary on the 9/11 bombers which described them as cowardly – presumably because they didn’t air their grievances with US foreign policy according to the rules of war – ie by taking on the entire US army and losing rapidly…

    In other words, if you think something is important why on earth would you play by the rules that others set down, rules you are more likely than not going to lose under…

    All that said, I still think that the approach taken is atrocious, even if I have some sympathy for why they may think it necessary.

  3. Good point, David. I’ve often considered that, if I really considered abortion to be murder, I wouldn’t be inclined to confine my opposition to polite discourse either. I guess, though, that I’d probably want to distinguish between using sensationalist tactics to change policy, and using such tactics just to shut up anyone who disagrees with me about it.

    There are a bunch of issues on which I feel really strongly, but I’ve reached my conclusions after listening to the various arguments around them. It would be pretty unfair of me to deny other people – my students, for instance – the chance to make up their own minds on the same basis.

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