Genetic Testing and Ethics

Just a brief post here on a particularly interesting article prominently featured in today’s NYT.   It’s about preimplantation genetic diagnosis–also called PIGD.  This is a topic I have written about before.

The idea with PIGD is simple, though the issues raised are anything but.  When one does IVF the pre-embryos grow to something around an 8-cell stage in a petri dish.   Without causing any harm to the developing embryo you can take one of those cells and do all kinds of genetic testing on it.   It is that ability to do genetic testing that presents ethical quandaries.

Of course, some people will say that all IVF is bad/immoral (I believe this is the formal position of Catholic doctrine).   But let’s just assume for the moment that we think IVF is okay.

The least controversial use of PIGD, it seems to me, is in selecting healthy embryos for transfer.  Remember that there are virtually always more embryos created than can/should be transferred at any one time.   Suppose you have six.   You only want to transfer one or two.  I’m fine with using PIGD to eliminate embryos without potential to develop into viable fetuses.   Indeed, I think some would say you should use PIGD to select the “strongest” embryo(s), and perhaps this would allow you to transfer only one embryo, which obviously reduces the risk of twins, etc.

The article discusses a different use of PIGD and raises a whole other set of issues–are there times when one should be obliged to use it?   Amanda Baxley carries a gene which will, in time, lead to an early and fairly horrible sounding decline/death.   If she wants to have a genetically related child should she take the chance of passing that gene on?   At a minimum, doesn’t it make sense to use PIGD to ensure that her children don’t have to face the children she herself faces?

But there’s a further suggestion:  Given the availability of PIGD, is it ethical not to test–to leave the matter to chance or fate or however you would like to describe it?  If we can eliminate the risk, shouldn’t we do what we can to do just that?   This is the flip side of “is it okay to test?”

There are also difficult questions with the entire question of screening.   You can use PIGD to screen for a lot of things and surely we are going to be adding more things to that list.   Would it be okay to use PIGD to pick an embryo likely to produce a tall child over an embryo likely to produce a short one?  While the eugenic overtones of this are chilling, I also find myself thinking that maybe it isn’t for me to tell other people what to do.  If there’s a line to be drawn between the permissible screening and the impermissible, why would I be the one who gets to draw it?  Is it a personal choice or a societal one?

I find myself thinking about abortion, too.  I support the right of a woman to elect to have an abortion and I don’t think I get to tell her the list of acceptable reasons she can choose from.  So if a woman could abort a fetus that carried a particular gene, doesn’t it make sense that she can screen out the pre-embryos that carry that gene?   Of course, it’s easier not to use a particular embryo than it is to choose to have an abortion.  And so maybe that means that embryos would get screened out that would not get aborted.  But assuming this is so, does it mean I treat the decisions differently?

I wouldn’t leave this problem just to the ethicists, as I think it is one we all need to consider.   That’s not to say, though, that I wouldn’t be interested in listening in on their conversations.





12 responses to “Genetic Testing and Ethics

  1. discussing at the dinner table. just thought id let you know.

    • If you can puzzle this one out, I’d be so grateful. There’s a use of PIGD that makes complete sense to me and then there’s an edge to it that makes me really queasy and I cannot work out how to draw that line or who gets to draw it.

  2. I’d say it is better than using donor eggs or sperm to avoid passing on a bad gene, and also that we should affirm in law that it is never required, people are not “obligated” as the bioethicist said in the article, to use PGD if they have a bad gene. People that have natural sex aren’t being immoral bad people, let alone criminals, for risking passing on a genetic disease. I think it should be limited to only a small number of diseases, and be free for anyone with a family history of those diseases.

    • Understand there will be those that this cannot help. There are still those heterosexual couples that will never be able to conceive a child that want one.

      • That’s certainly so. It’s just another dimension of new technology that presents us with questions we didn’t always have to answer.

        • With my non obstructive azoospermia I did not pursue a biopsy because one there never was a case of any sperm being found in someone with my Microdeletions and the condition could be passed along to a male child. Though a procedure like this May have pushed me to pursue a biopsy if there was a chance that it could extract sperm.

    • I understand your point of view, but I’m also confident that different people will draw different lines. Do I take it you accept the use of technology chosen by the people in this article? Not everyone would, of course. You’d limit access to a small number of diseases. How would we (or you) decide which diseases are on the list? And what if someone else has a different list–which is almost certainly the case.

      It isn’t (for me) that people who know they carry heritable diseases and reproduce via sex are bad. It’s that I can also understand that they might choose this path–which assures them that they will not have a child with the trait in question. I’d also accept it if they chose to use sperm from another source (assuming of course it was the male who carried the heritable trait.) I think these are personal decisions and I don’t feel entitled to impose my own views on others. But of course, that is why the whole topic is unsettling to me. I know that some of the choices others will make are ones I don’t like at all. But I still think it’s their choice.

      • Yeah, I accept PGD and discarding embryos (and I oppose “personhood” laws that say that un-implanted embryos are persons and alive, I think they’re not yet ensouled or alive and that law, besides ending all abortion which I think is a right until pregnancy is public, would force us to implant every frozen or cloned or GE’d embryo which I think is worse than discarding them), though if we could ban all IVF I would support that too.

        You do know that sperm and egg donation is eugenic, right? People select for tall donors all the time! Are you troubled by PGD because it implies that there is some benefit to having one’s own children rather than getting sterilized and having some unrelated child?

        As to how to limit the diseases, Congress should set criteria that the FDA would then apply to determine what genes/diseases meet the criteria. If it isn’t on the list, it should be a crime to use PGD to select for it.

        • It’s certainly true that there are overtones of eugenics when people use third-party gametes because they select for certain characteristics. Some of this strikes me as relatively benign–as when people choose characteristics that match those of the partner who isn’t providing genetic material her/himself. But some–like choosing for height or “intelligence” etc–is more troubling. I see this as similar to PIGD and I am troubled by it–so I think your speculation (which seems to assume that I am not troubled) is unfounded.

          There is a difference, but I’m not sure what to make of it. When you choose gametes you may or may not end up with the desired trait. PIGD is after fertilization so you really are more directly choosing the traits the child WILL have rather than the traits the child MIGHT have. But as I say, I don’t know quite what to make of that difference.

          • well then you can relax about the anonymous gamete donors. people can try to choose for intelligence all they want but its really just a stab in the dark since they never actually met the person.

          • Good point about donor gametes being more random than PGD. But I think that is a wash as long as PGD is only used for extreme diseases. Certainly it’s eugenics to screen out the disease, but if it means a couple can have their own children, it’s still sort of not eugenics, in that the same child could have been born naturally if they were lucky. So it avoids the problems of using a donor and the problems of abortion and the problems of being rejected for marriage.

            I am glad to know you are troubled by the eugenic aspect of gamete donation. What I was suggesting, perhaps equally unfoundedly, was that you were troubled by the implication that using a sperm donor is second best to having children using a couple’s own gametes.

  3. I am a carrier for a fatal disease, those who have it rarely survive past early childhood. It is recessive, so I will never have the disease. I chose a sperm donor who had been screened for the gene and had a negative test. If I could not find a screened donor or if I were married to a man who was also a carrier I absolutely would have had embryos genetically tested. I could not being a child into the world to suffer and die like that.

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