There are a couple of items in the paper today that lead me to revisit the topic of our increasing capacity for genetic testing and where this might lead us. (Both of them happen to have Seattle connections, which is really neither here nor there, but I notice these things.)
On the front page of the NYT you can find this story about the ability to do genetic testing of a fetus by drawing blood from the pregnant woman and collecting DNA samples from genetic parents of the child. Virtually the entire genome of the fetus can be determined with no risk of causing miscarriage. Of course, we don’t yet know what to do with all that information–we don’t know a lot about what most of it even means. But you can 3000 diseases that are caused by a defect in a single gene. Some of these are quite serious.
The test is expensive and won’t be widely available for a while. However, as the article notes:
“[T]the cost of DNA sequencing is falling at a blistering pace, and accuracy is improving as well. The researchers estimated that the procedure could be widely available in three to five years. Others said it would take somewhat longer. “
Add to that this story, which will be in Sunday’s NYT Magazine. It’s about three genes that seem to cause Alzheimer’s disease. If you have one of them, you will develop Alzheimer’s. (You might get Alzheimer’s even if you do not have one of them. Again, there is a great deal we do not know.) If you have these genes there is also a 50% chance that your genetic offspring will develop Alzheimer’s as it is a dominant gene.
I’ve written before about difficult choices increasing availability of this sort of information will pose. Though there are obviously questions about whether you want the information for what it tells you about your own personal health, I tend to focus on how it affects decisions regarding child-bearing. I’ve explored some of these questions in those earlier posts.
I am probably about to repeat myself, but here’s what I find myself thinking. If (but really not “if”–it’s “when”) this sort of testing becomes available does it take us (further) down the road towards eugenics? Surely it has to.
I say further down the road, because really, if you think about what we do now we are already on the path. Prenatal chromosome testing has been available for a long time and clearly some people use it to decide whether or not to continue with a pregnancy. Some of these decisions are doubtless more defensible than others (I’m thinking here of sex selection), but typically they are difficult and deeply personal decisions.
Apart from the new blood tests, PIGD allows testing of chromosomes before a pre-embryo is transferred to a woman’s uterus. Thus, it allows you to avoid a pregnancy you might otherwise choose to terminate. I’m sure for many people this is a less problematic course of action. This must lead some people to do IVF (which is what you have to do if you want to use PGID), even though it is obviously more expensive in and invasive than conception via intercourse. Will the new technology described in today’s article change the balance people strike? Probably it will for some people.
If we have this information–or if we are offered ways to get it–what choices are we confronted with. Will less than perfection do? It’s rather shocking to me to see Marfan syndrome included in the same list as cystic fibrosis and Tay Sachs in the NYT article. The latter two are generally fatal, but that’s not true with Marfan, which I know because I have it. Marfan does, however, have a variety of health implications. Is it enough so that if you are PIGD you’d reject an embryo with the Marfan gene?
In the past attention has focused on the ART and eugenics. No question there are issues here–when you obtain gametes from a third party you almost always select for particular traits. (I’ve never heard of anyone just taking total pot-luck.) When you do IVF you nearly always do some PGID if only to select viable embryos.
But as today’s stories illustrate, the eugenics questions aren’t limited to ART. Anyone having children will find themselves increasingly confronted with these sorts of questions. The more we know about DNA, the more information we have, the more we have to decide what we’ll do with the information. And for people worried about genetically transmitted traits–like the Alzheimer’s gene–ART with their own gametes might seem the best course, because it allows for genetic screening at the earliest (and for some, least morally problematic) time.
So what’s the point here? I don’t for a moment mean to minimize the importance of the moral questions presented by getting all this information. But the questions aren’t limited to ART and restricting ART won’t make the questions go away. Increasing understand of genetics and the ability to read the codes gives us knowledge and with knowledge, choices. The most important question, it seems to me, is how we make these choices whether we use ART or not.