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Science progresses ahead of ethics again

June 8, 2012

BBC reports that scientists from University of Washington have managed to sequence the genome of an 18-week-old foetus only from the fragments of its* DNA found floating in the mother’s blood. Genetic testing of unborns has been done before, of course, but reaching into the uterus to take a sample carries a small risk of inducing miscarriage, so it’s only justified when there is reason to suspect something. The new method, when properly developed, opens the possibility of screening every foetus for genetic diseases.

But do we really want to know? And what actions are justified, given the knowledge of your foetus’s genes?

Josephine Quintavalle, from the Pro-life Alliance, says in the end of the article that “genetic testing in utero currently almost inevitably leads to abortion of the unborn child”. Well, no. I really hope that she was misquoted, because there is a very important qualifier missing from that sentence. Currently, if a genetic test in utero is made, and the test shows the presence of disease, it usually leads to abortion. Because the people asking for tests would like to keep their child, but only if it won’t have to suffer the same horrible fate as dear aunt Helen. Those who have decided to bear the child regardless probably don’t do the test. The tests of today are not without risk, remember? And the people who inevitably wanted to abort, well, they have an abortion without bothering to do a genetic test before.

For these reasons, I don’t think Quintavalle is correct in her assumption that abortion rates for foetuses with confirmed genetic diseases would stay the same, even as genetic testing in utero is expanded to cover every pregnancy. (If that ever happens. It might prove too expensive.) If you’re testing everyone, you will also be testing the unborn children of people determined to continue the pregnancy no matter what. I might also point out that 18 weeks is past the time limit for free abortion in nearly every jurisdiction.**

Still, we are forced to return to a thorny old question: is it better to never have been born, or to have lived a life full of pain and disease? A parent naturally wants the best for his or her child. But which course of action IS the best?

Science can’t help us here…

* no gender given

** In Quintavalle’s home country Great Britain, however, the limit is 24 weeks.

  1. i’ve been thinking of commenting on this, but i don’t know what to write. but first of all, i don’t think ethics can ever be left behind, as soon as anybody discusses the question of right or wrong concerning some certain subject, ethics have caught up. so right now, due to your text, ethics are already on the page. but on the other hand, this goes to show how being given too much possibilities by medical science doesn’t necessarily improve the quality of life. how can you ever know that giving birth to a child with no genetical dilemmas at all is “better” – or rather more fulfilling – than giving birth to one with some genetical – how should i put it – “disorder”. isn’t life supposed to be interesting, and sometimes challenging? otherwise, we could all have stayed on the monocellular stage just floating around in the protooceanical sea.

  2. I meant both science and ethics more in the consensus sense – I wouldn’t say ethics have caught up with this question until there is a societal consent on which genes it’s better to never be born with. In the discussion sense ethics are of course already there, even in the original article there were some rudimentary ethical assumptions, particularly on the part of Quintavalle. There have also been science fiction works discussing precisely this issue even before it became technically possible. Gattaca springs to mind.

    I also think my life is totally challenging enough as it is, even if I don’t have any hereditary diseases (unless you count a tendency to have migraines, which does run in the family). There is fulfillment in overcoming yourself and your limitations, but everybody has limitations, us healthy people too.

  3. Dr. rer. nat. Evil permalink

    Not wanting to sound too pessimistic, but I wonder if it is realistic to expect such a consensus anytime soon. There is, for instance, as of yet no strong societal consent on matters as simple as who should be allowed to be married to whom (i.e. pro/contra same-sex marriage). Prenatal diagnostics with all their consequences seem to me a bit more complex than that.

    I agree with the Naughty Blogger that life should be challenging and interesting, not to mention diverse, and I shudder at the thought of a uniform society. On the other hand, is keeping mankind’s hereditary diseases going really the kind of challenge we want? This is a tricky issue for sure, and I fear I will not solve it in this blog comment either. It will boil down to very personal decisions of individual parents, and I am sure our socieety will see the full range of possible outcomes, from abortion at the tiniest anomaly to knowingly giving birth to a severely “defect” (yes, it is hard to find proper terms here) child. Ideally, we will have a similar situation as today just based on more and better information. And so I end this comment not wanting to sound too OPTIMISTIC.

  4. I agree, we won’t see consensus on this one anytime soon (and if it comes, it’s likely to be different in different countries). It’s much easier to reach scientific consensus on how to do a thing, than to reach societal consensus on when it’s justified to do it. Hence the “again” in the post title…

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