Quick Note on Genetic Screening and What the Future Might Hold

A little while back I put up a post about progress in DNA screening and what it might mean for arguments about needing access to the medical history of the people we get our gametes from.    With that in mind I wanted to put up a quick link to this story.  (For a more popular press version of the same story, try this link.  If you want to go the other direction, here’s the source journal article.) 

The gist of these stories is that it is now possible to provide preconception screening for 448  severe recessive childhood diseases.  (That’s the number from the abstract.  I don’t know why the press says 580.)   That’s notable for two reasons, I think. 

First, anyone doing ART with third-party gametes or anyone providing third-party gametes (sperm and egg banks) can screen the gametes for those diseases.   (One story says the cost might be around $400, which isn’t chicken-feed but also isn’t that much in the grand scheme of ART.)    This would be a far more reliable indicator than even the best family medical history.   While this might raise ethical issues (see, e.g. Gattaca) it’s an important development in what ART can offer. 

Second, any individuals thinking of reproducing without ART can have themselves screened in order to understand the possible risks of reproduction.   Here, too, the screening would be more useful than having even complete family medical histories.    (I wanted to stress complete because for so many people who are being raised by the people who provided the gametes for their creation, family medical histories are incomplete.   I, for example, know that I had a grandmother who died quite young but I do not know what she died of, nor is there anyone I can ask.)  

And here, too, the knowledge the screening provides brings with it difficult questions.    Some Orthodox Jewish communities have devised dating programs that take genetic composition into account.     (Here’s an personal account of the choices one might be faced with.) 

This isn’t the future anymore.   It is the present.   While individuals may choose whether or not to be screened, it is easy to imagine that this type of screening, for better or for worse,  will increasingly be the norm.

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7 responses to “Quick Note on Genetic Screening and What the Future Might Hold

  1. This is why we need to affirm that people have a right to use their own gametes, because, well, they do! They shouldn’t feel they have to use donor gametes, but as more people screen and use donor gametes instead of their own, people that don’t screen will find themselves called evil and irresponsible and then people won’t feel they have a right to reproduce anymore.

    • There’s already been some debate along these lines. There was an instance some years ago where hearing-impaired parents wanted to have a hearing-impaired child so that they could all share the same culture. (I cannot recall the details of why their desire for a child with this attribute became public–and they must have been using donor gametes in order to be looking for this trait.) The idea that you would want a child who was less than perfect was repugnant to some.

      I can see that some might say this is different from what you suggest. But at the same time it is simliar. Once you start to pick genetic traits, can you pick less than perfect ones? I think this is a conversation we–as a society–will have to have. There’s no avoiding it .

      And what you wrote made me think there are two important questions here. One–which you implicitly raise by answering it–is whether people do have the right to use their own gametes? Is there any circumstance under which we’d say “no?”

      The contra is whether people have a right not to use their own gametes. As people are more aware of their own genetic make-up, they might decide that a 1/4 chance of a serious defect is too great and thus seek to use third-party gametes. Do they have a right to do that? Should we think of that differently than the other times folks want to use third party gametes? (Those have been the subject of a lot of discussion already.)

      • I think the deaf couple was using PGD, in a way that most people would think was wrong, choosing the embryo that ought to be discarded and discarding the good embryos. I think that is an unusual case, and ninety nine percent of the time parents would feel they had no choice but to do what experts and society said they should do. But the fact that they were allowed to ignore public sentiment doesn’t prove to me that the right to use their own genes is secure going forward into the future. It seems entirely possible that more cases like that could spur society into prohibiting labs from letting people conceive children with any defects, even requiring screening and PGD when a couple uses IVF.

        “is whether people do have the right to use their own gametes? Is there any circumstance under which we’d say “no?” ”

        Sure, I can think of lots! They might carry substandard genes. They might not have the gene for high intelligence between either parent, and even PGD is not going to find a good enough embryo, they’ll have to either genetically modify it (like Will Saletan thinks we should do for Nigerian children, writing: “Don’t tell me those Nigerian babies aren’t cognitively disadvantaged. Don’t tell me it isn’t genetic. Don’t tell me it’s God’s will. And in the age of genetic modification, don’t tell me we can’t do anything about it.” I suppose Saletan thinks all we have to do is offer the modification to people and they will happily volunteer to have their children genetically improved, but it’s clear that they would be pressured into it. And it’s pretty offensive just thinking it would be a good idea. I can’t believe he is still writing for Slate, actually.

        That’s why we can’t really have a right to use our own genes AND have a right not to use our own genes, because the option to use better genes is coercive pressure that by itself implies that there is no right to use bad genes, even if it might technically remain a legal option, it is rendered moot by social pressure and experts convincing people not to be so selfish and irresponsible. The only way to really protect the right to use our own genes is to prohibit using donor genes or modified genes.

        • I think Mark provided links to materials from the instance I was thinking of.

          I think the point you raise about how offering choices can actually be coercive is very important. I’ve given this a lot of thought in other contexts, but didn’t see it here until you mentioned it. For instance, if you gain access to marriage for same sex couples, in part based on the argument that it is best for children if their parents are married, then it is harder for a same-sex couple with children to choose not to marry. Why would you put your child at risk this way?

          The question, then, is whether the coercion is inevitable. Perhaps it is. Of course, the coercion doesn’t actually foreclose choice. It just makes one choice more difficult. And I suppose you could say that is okay–if the option that is more difficult to choose is one you really think is a bad one.

      • The case you’re thinking of was where a lesbian couple sought out a sperm donor with a family history of profound deafness:
        http://news.bbc.co.uk/1/hi/health/1916462.stm

        I happen to think that’s wrong, though many people, Deaf and otherwise defended their decision, including the director of the Oxford Centre for Applied Ethics:
        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124279/

        Lots more articles on the case here:
        http://www.google.com/search?q=Sharon+Duchesneau+and+Candy+McCullough

  2. Somewhat off topic but the story of the deaf parents reminds me of a GREAT documentary film: Voices of El Sayed
    It’s about a Bedouin village that was inbred for so many generations that deafness for them became simply a variation of normal- they developed their own sign language which EVERYONE, hearing and deaf spoke- and how that dynamic is being affected by the transition to modernity.

    Highly highly recommended.

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