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The great unasked question in Down’s syndrome screening

Posted in Attitudes to disability, Ethics, Screening by Matt at WelcometoIllinois on December 8, 2008

“Australia urgently needs a national screening policy for Down syndrome, experts say, after international research showed it could halve the number of babies born with the incurable genetic condition,” reports the Sydney Morning Herald.

“Every pregnant woman should be offered screening for Down syndrome regardless of age, and screening should be co-ordinated by a national policy, according to experts,” says The Age.

“Experts say Australia needs a national screening policy for Down syndrome as research shows it could halve the number of babies born with the genetic condition,” states News-Medical.net.

The medical experts are responding to this story from Denmark in which a national screening programme halved the number of children born with Down’s syndrome since it was introduced in 2000.

What none of the reports addresses, however is why Australian medical experts would like to produce similar results over there. The experts talk encouragingly about lowering risk and improving detection rates but none of them is quoted as explaining why they would want to do this in the first place.

It is as if the benefits are self-explanatory. But are they?

This is of course not an Australian peculiarity. The media’s focus on statistics in the UK also invariably sees a reduction in the number of children being born with Down’s syndrome being reported as a good thing, without any discussion of why that should be the case.

Why is it that reducing the number of people born with Down’s syndrome is a good thing in the eyes of medical experts? Yes there is the fact that Down’s syndrome can limit the abilities and lives of those affected, but does society help these people by reducing their number?

The call for more widespread an accurate screening for Down’s syndrome has little to do with quality of life. In a recent comment in the Independent, Dominic Lawson noted: “the NHS Down Syndrome screening process is hugely expensive, justifiable on cost-benefit grounds purely on the basis that it will detect and destroy children who would otherwise cost the Health Service much more as survivors”.

All of which would be fine if society had come to some kind of conclusion that the benefits of reducing the number of people with Down’s syndrome outweighed the cost of doing so.

As Michael Bérubé stated in his 2007 article for Globe and Mail (also available here) “the possible eradication of Down syndrome just isn’t something our species has achieved, or should achieve, any consensus about”.

Quoting a report from Nursing Ethics, Frank Buckley from DownsEd recently pointed out that “there has been no parliamentary discussion or law on screening in Britain”.

As I previously covered, there are real doubts among research ethics committee members as to whether screening for Down’s syndrome is even ethical.

The support we have received since our son was born has been fantastic and there are a great many services available to us, but they remained a secret until after he was born.

The information we were given in the run up to deciding whether to keep him or not seemed adequate at the time. In hindsight, it was very one sided. As Frank Buckley pointed out:

“The NHS’ so-called ‘best practice’ information leaflet devotes less than 3 pages to informing parents about Down syndrome. Most of this limited information is about maternal age and chromosomes rather than people. People who have Down syndrome are not featured talking about how they view their lives. Nor are their families. There are no photographs of people who have Down syndrome. This ‘best practice’ guidance then devotes 12 pages to describing the screening and diagnostic process in detail. The message? On balance, parents should be far more interested in learning about the screening process than the condition actually being screened for.”

If you are going to advocate reducing the number of a specific population of society the least you can do is be prepared to provide a coherent and honest argument as to why it is necessary, or even desirable, to do so. That’s not too much to ask, is it?


5 Responses

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  1. […] The importortance of information in Down’s syndrome screening Angela Blakston has written an excellent column in The Age responding to recent calls for Australia to develop a national screening programme for Down’s syndrome (which I mentioned here). […]

  2. […] The importance of information in Down’s syndrome screening Angela Blakston has written an excellent column in The Age responding to recent calls for Australia to develop a national screening programme for Down’s syndrome (which I mentioned here). […]

  3. […] to stay – medical advances cannot be reversed, but it is important that we as a society consider why that screening occurs and whether the results are […]

  4. […] Down’s syndrome, but only after G was born, and while I was very happy to receive it, it did annoy me that the information hadn’t been given to us […]

  5. […] previously noted that in much of the discussion about Down’s syndrome screening there is an assumption that […]

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