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Human beings are not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages

Posted in Diagnostic testing, Media, Screening, Statistics, This blog by Matt at WelcometoIllinois on October 29, 2009

The UK’s coverage of Down’s syndrome screening and statistics continues following the publication of a report in the BMJ.

Tom Shakespeare, research fellow at the Institute for Policy and Practice at Newcastle University, has written an interesting and provocative piece looking beyond the statistics to the human cost of screening for Down’s.

I started off submitting a quick comment but it quickly became the spelling error-packed diatribe I have been considering writing for some time. I’m not sure where I am going with this in all honesty, but I think I am building to something here…

Having been through the process of dealing with a pre-natal diagnosis of Down’s syndrome I have come to the conclusion that human being are simply not capable of deciding whether to continue with the pregnancy of their unborn child based on statistics and percentages. I agree with Tom that we need more research into the long-term emotional consequences of these difficult decisions but would go further and suggest that we need to radically rethink how we as a society approach screening.

In my experience, johnthewayne is correct: “we test for downs, not because it is the worst thing in the world, but simply because it is possible”. The result is that parents are supplied with information that is supposed to be “accurate” but tells them nothing.

These were ours: “a one in 11 chance based on the nuchal fold; one in 4,000 based on the blood; one in 76 in total, compared to one in 300 on average for my wifes age; a 95% accuracy rate for the combined test, compared to 85% for just the nuchal fold measurement; a one in 100 chance that the next test could result in a miscarriage.”

If you think you know what you would do faced with these statistics think again. You cannot possibly know until it is your own child you are deciding the fate of.

Then there is the fact that the effects Down’s syndrome are a spectrum. Will your child have heart problems, thyroid problems, gastrointestinal problems, hearing problems, leukemia, hypotonia? None of the above? How severe will the learning impairment be?

The screening process asks all of these questions and provides answers for none of them, and yet we are expecting would-be parents to use the results of screening to decide the fate of their unborn child. Counselling can help parents understand what Down’s syndrome is, but it does nothing to help them make the most important decision in the life of their child.

In this context it does not surprise me that so many people decide to terminate following a pre-natal diagnosis (aside from the fact that they may decide they do not want to or not capable of raising a child with Down’s syndrome, which is an entirely valid response).

In my experience the decision to terminate is the only choice facing parents that enables them to regain control of the situation. As we considered out options we were drawn almost inevitably towards termination by the fact that it was the only decision that provides a definitive outcome, rather than more chance.

I say almost – in the end we decided that Downs syndrome, in and of itself, was not enough to justify abortion, and that we would take that chance. Our son is now one year old and healthy and happy and I have not regretted our decision for a second.

However, my desire to rethink the screening process is not based on ensuring more parents take the same decision as us – that is for them to decide – it is a desire to ensure that the process itself reflects the severity and long-term implications of the decision itself.


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