Where Genetic Testing Will Lead Us

I’ve been catching up on comments and so have been thinking about a lot of different topics today.   A post from last month reminded me of this little commentary from earlier in the week.

The commentary is about choosing to have a child with Down Syndrome and it left me with a lot to think about.  A critical piece of the background here is that now one does have this choice–or at least, some people do and theoretically most can.   What I mean is that (according to the article) there are now simple and very low-risk tests that can be done early in a pregnancy to tell you if the developing fetus has Down Syndrome.

The earlier post is about pre-conception genetic screening.   It’s now possible to do quite a lot of genetic screening on the people whose gametes will be used to create a child.   Now this is obvious importance to those using third-party gametes, where what we’re talking about is screening people who provide eggs and sperm.  But why should it only matter there?

Suppose you and your husband were planning to have a child.  You knew your husband’s family medical history and it revealed a tendency towards some serious condition.   I suspect in this circumstance it might already be fairly common to have the husband tested to see if he carries the gene for the condition.  If he does, then that gives you information about the odds that the child you create will have that condition–maybe it leads you to think about third-party sperm.

Or maybe instead it means you create embryos in vitro and have them screened (that’s PIGD) to find the embryos that do not carry the risk.  (Obviously this depends on what sort of thing we’re talking about and I’m not being remotely specific enough to be concrete.)   You don’t use the embryos that carry the risk but pick the ones that do not to transfer.

For many (but not all) people, this sort of preconception (or at least pre-transfer) testing and screening will be less problematic than the sort that is done during a pregnancy.   I think many people would find it easier to choose among embryos than they would to have an abortion.

But it does set up similar choices.   What kind of a child are you willing to have?   What kinds of risks and commitments are you willing to take/make.   Knowledge is power, of course, but knowledge also brings with it responsiblity for choosing.   What was once left to chance is now within your control.  Choosing not to test–choosing not to know–is still choosing.

I think for the moment heterosexual couples who wish to have a child together are probably unlikely to do screening or PGID unless there’s something fairly serious at stake–some risk of a seriously impairing or life threatening problem.    Perhaps this is actually a virtue of our attachment to genetic connections–you are unlikely to choose to use third-party sperm in order to avoid a near-sighted child or a short child.

But once you start with PGID, it’s not hard for me to imagine the choices and challenges multiplying.   If they could tell you which embryos would develop into taller children vs. which shorter, some people might take that into account.  I mean, you have to choose somehow.  And if they could tell you, you’d have to decide that you didn’t need to know.

I don’t mean to go all brave new world here, really.  There are limits to what we can do right now.  But the pace of change in this field has been incredibly rapid and it doesn’t hurt to think about what might be lurking round the corner.

For the moment the most obvious implications are for sperm and egg providers.  There extensive genetic testing is far more common than it was (although reliance on family history remains important.)  If consumers insist on genetic perfection than the pool of providers will grow smaller and smaller (because so few of us are genetically perfect).  It will be interesting to see if some genetic imperfections (say eyesight) turn out to be acceptable after all.

 

 

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5 responses to “Where Genetic Testing Will Lead Us

  1. I took the risk and, although I was not prepared to raise a child with downs syndrome, I was prepared to raise a child with downs syndrome.

    I first learned about Kathleen LaBounty and her brother with Downs Syndrome, in a post by Alana Stewart on Family Scholars, “To Buy or Beget”.

    http://familyscholars.org/2011/02/21/to-buy-or-beget/

    Kathleen is the offspring of a sperm donor and so his her brother born 10 months before her. He was given up for adoption by their Mom and their Step Father, she was not. I was pretty outraged that her Mother had given him away because he was flawed and went right back to the drawing board to have Kathleen. A reckless decision on her mother’s part, not because she was choosing to reproduce knowing that the next child might have Downs as well, but because if the next child did have Downs she’d give that one away as well. The father of her brother made a reckless decision as well, he chose not to know the character of the person he was reproducing with and he chose to abandon his offspring at birth and know nothing about the child’s health safety or welfare. He chose to be ignorant of the results of his actions. People normally know the results of their reproductive actions and it guides their future decisions and if he knew and chose to reproduce again anyway, he would hopefully have done so being willing to raise a child with Downs Syndrome himself or at least he could have worked to donate sperm only to women prepared to meet the extra demands of raising a special needs child.

    Kathleen had been searching for her father and her brother for many years and her story really touched me. How badly she wanted to find him. She talks about her unsuccessful search here
    http://childofastranger.blogspot.com/2008/11/looking-for-half-brother-with-down.html
    and here
    http://www.columbian.com/news/2011/oct/03/donors-offspring-want-to-know/

    as well as on NPR and the Today Show etc. To me she and her brother are the poster people for why gamete donation is damaging – donors are totally blind to the results of their actions. They assume everything turned out fine so they just keep on reproducing blindly, randomly and in heretofore unknown massive amounts only possible through industrial distribution. If you know you might produce a child with disabilities its irrisponsible to reproduce only if you go ahead with it and are not planning on taking care of the child yourself. Had her mother become accidentally pregnant that would be a different story but she was inseminated again a month later. Kathleen’s story touched me so much I got a hold of her and found her brother and she is now getting to know his adoptive family that welcomed her with open arms.

    They told her “If your his family, your part of our family”. That made her very happy. Me too.

  2. In only a tiny, tiny fraction of the cases is Down’s hereditary. In most cases it occurs spontaneously, hence having one child with Down’s doesn’t mean any more of your offspring will.

    • Downs generally comes with a host of other health problems though right? Age of the woman can cause it and I thought age of the man as well.

      • Age of the woman does not cause it, per se. The probability of having a baby with Down’s increases with maternal age (and it now appears paternal age can play a factor, too). However, women in their 20s account for the largest number of Down’s children – because more women in their 20s have children than do women in their 40s. There is a form of Down’s that’s inheritable but it affects only the tiniest percentage of children born with the condition. Largely, Down’s is simply a spontaneous event.

        • Autism I know has to do with the old gestating body and not necessarily the age of the egg that made the embryo. I read that women in their forties and fifties are damaging otherwise healthy embryos belonging to young women. If we were really writing down who the embryo was related to we could keep track of this stuff. Its important to know if older women are unwittingly damaging the offspring of egg donors in their play to experience what it would be like to be a mother.

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