A Right To Genetic Testing?

I’m going to pull away from that extremely lively discussion of surrogacy (always a fascinating topic) to talk a bit about another story that caught my eye a while back.    At the end of August the European Court of Human Rights found that Italy violated the rights of a couple carrying cystic fibrosis when it refused to allow them to do PIGD.   (We’ve talked about PIGD before on the blog.   It is pre-implantation genetic diagnosis and it allows you those doing IVF to screen pre-embryos before they are transferred into a woman’s uterus.)   To put this slightly differently–the court ruled that the couple had a right to screen the pre-embryos before transfer.

Italy is one of three European countries (the others are Austria and Switzerland) that ban use PGID.  The ban is justified as being necessary to protect the health of the mother (not a justification that I can understand) and to prevent eugenic abuses.   (Of course, the ban might also be seen to be consistent with Catholic doctrine, but remember that IVF  itself is impermissible under that doctrine.)

Curiously, Italian law would have permitted the couple to get an abortion if the mother were carrying a child who would have CF.  Once you add this into the mix it seems to me the ruling of the European court is unsurprising.   Essentially Italy would permit the couple to select against the CF carrying embryo, but it insists that the selection be made at a later time.  There’s nothing (to my mind) good about doing this later rather than sooner.

Apart from the oddity of Italian law, though, it seems to me the case can be read to frame a larger issue.  Even if Italy did not permit abortion, does the couple have some right to do PGID?   To say no, it seems to me, is to say that if they want to have a genetically related child they must bear the risk that the child will have CF.   Particularly if the genetic relationship is important to you (and it’s less important to me than it is to many readers) this seems a terrible burden to place on them–especially when there is an alternative.

Perhaps it is wrong to couch this in terms of rights, at least to the extent that it would require me to go and read the European Charter and so on.   Maybe I should frame the question this way:  Should the law allow a couple like the one here to use PGID?   It seems clear to me that it should.

There’s another point the case highlighted for me.   If you accept that a woman has a right to elect an abortion (and of course I know that not everyone does), then it makes no sense to oppose PGID.   I don’t know that I’d seen this quite so starkly before, but surely this case makes that point, too.

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7 responses to “A Right To Genetic Testing?

  1. I agree, it wouldn’t make much sense to support legalized abortion, but not IVF or PGD. I could see the reverse happening – I know some people who are ok with IVF and not abortion, because they think it’s not a life until it has a heartbeat – but the reverse would make no sense at all.

    • There is another angle in which it makes a lot of sense, because the laws probably developed in different contexts. Abortion law developed separately from ART law.

      • Also, it would be hard to determine why the woman chose to have an abortion. If abortion is legal, its not up to the state to determine people’s motivations even if they could.
        However, I suppose the state could ban genetic testing during pregnancy that might lead people to have abortions.

        • It might be that the law in Italy only allows abortion for a “good reason.” I don’t really know. But if an embryo with CF is a good reason for abortion, then it ought to be a good reason for PGID.

          I suppose a state could ban genetic testing during pregnancy, but I think that would be extremely unpopular. Obviously there are people who do not choose to have testing for a variety of reasons. But many people want the information even if they do not consider abortion an option.

          Particularly as pre-natal testing has gotten easier and easier (blood tests now) it seems to me this geni cannot really practially be put back in the bottle. But perhaps I am too confident on this point.

      • I’m sure this is true–that they did develop in different contexts. That means it is historically understandable. But I think understanding how Italy came to this place is different from saying it is a sensible place to be. In the end, even though I think you are right about how things developed, it doesn’t make sense.

        Certainly if I view this from the perspective of a prospective mother it’s incomprehensible to me. Even when abortion is quite safe it carries greater risks to her than does PGID. (I don’t see that PGID carries any risk to her.) And whatever the stress of the decision-making process, it seems to me greater in the abortion context than the PGID context. Thus, to give her the right to do the more dangerous and difficult thing but not to accomplish the same end by a safer and easier route is senseless.

        And then add to that what Rebecca observed–that there must be some people morally troubled by abortion but not PGID. The idea that you allow the former but not the latter cannot serve their interests, either.

    • I am pro choice but am begining to lean towards being against IVF because it starts to take reproductive responsibility out of the hands of the woman whose body the eggs are retrieved from and then all sorts of chaotic things begin happening. I do believe that women, heck people are in charge of their own bodies and are responsible for the actions of their bodies and if they wish to avail themselves of some medical miracle they should go for it. But I think that with reproductive right comes the possibility of parental obligation regardless of what any law that people write says. The reality is that if your body reproduces you are in fact, blackly whitely scientifically responsible for another human beings life whether you intended to be or not that is just the reality of the situation. The problem with allowing other people to handle your eggs or your sperm or your embryos is that your own body would not make the mistake of accidentally implanting your embryo in the wrong uterus. Your own body would not capitalistically misappropriate its eggs and sell them to other patients at a clinic as if they’d come from a donor so it could net a clean 100% profit selling an egg that was never purchased. Mistakes happen and misappropriation happens and these are not acceptable risks when your talking about someone else’s life and freedom being compromised. Its not really a woman’s place to make the decision that there is an acceptable level of risk to her offspring should they be born accidentally to the wrong people in order that she may have the chance at getting to raise at least some of her offspring herself. I bet eggs all look alike and it should disturb the planet that it is not already standard protool to dna test and rfid every single egg or sperm that is harvested from people’s bodies so that they remain permanently connected to their own cells for the record so that they can remain permanently connected to any offspring born of those cells intentionally or otherwise. When we talk about acceptable levels of risk we need to identify who reaps the benefit and who bears the risk. Its insulting to tell people would they rather deal with being in a compromised position or would they rather never have been born. That is ridiculous. Just worry about whether or not born people are getting a fair shake and what we are talking about is people being born and potentially excluded from their families and denied their identities. Until the method of handling peoples genes is rigorously dna checked over and over and over again and eggs are counted and recounted and sperm is measured and remeasured and babies are all tested at birth to match to people claiming to be there parents I don’t think anyone using donor gametes should feel confident that the eggs or sperm they bought was not misappropriated junk from some unwitting fertile or potent patient, because patient genes are free and nobody is checking to see where the genes are really coming from. They do call them banks right? Not storage facilities. Don’t banks use the stuff you deposit for investments of their own, keep ten percent of the collective deposits on hand? The money you withdraw won’t necessarily be the very same money you put in but its just as good and I imagine gamete banks work much the same way. Put your eggs in, get someone else’s out. Why not you’ll never know and if you did, what could you really do about it. So prochoice here not so much pro ivf.

  2. My parent's donor is my father

    FTDNA!!! (www.familytreedna.com/landing/family-finder). I linked my people back to my father even after I knew who my father was. Is it a “Right”???? Ooooh that makes me smile. Yes, indeed, no one can tell us we don’t have a “right”! anymore!! It’s liberating! But not a solution to the problem to begin with.

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