Edging Towards That Brave New World

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.

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6 responses to “Edging Towards That Brave New World

  1. Julie said: “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.”

    The key with your statement is that YOU know you have it – it can be a fatal disease when it is unknown and your diagnosis comes too late to save your life…

    Whether it is eugenics or not, I do believe in genetic testing although my choice would be pre-conception testing of the genetic parents. It will not create perfection until the day they discover all the caustive genes, gene combo’s, mutation rates/drift, the impact of specific segments deleting, what turns a gene on or off, how environmental plays into and can mitigate it, how just the proteins impact it. That isn’t going to happen as quick as the ability to sequence cheaper, faster will happen, nor will that be able to everyone around the world. As to the diseases – single gene diseases seem to be able to be defined but so many are diseases that are multi genes, and then throw in the dominant or recessive or autosomal (?) dominant etc. As to diseases themselves – there are the common diseases and then over 7,000 rare diseases alone that are most likely genetic in nature that cause a boatload of pain and suffering and death but few dollars to research.

    • Right–knowing you have Marfan Syndrome is key. But given all the genetic testing available it seems increasingly likely that people will know. Will they still choose to have children with Marfan Syndrome? I imagine some will and some will not, but the split on this will (it seems to me) be different than on diseases like Tay-Sachs where the outcome is more dire/less treatable. But of cousre, that could change as treatment evolves.

      I can understand preferring preconception screening, but it leaves in a lot of variables. I might turn out to have something where there is a 1 in 8 chance of passing something dire along. The only way to know if its happened is to do post-conception (but perhaps pre embryo transfer) screening.

      I think there are two things going on here that might be worth trying to think about separately. First there is the idea of designing a child–or at least weeding out those with design flaws. This makes many people uneasy for many good reasons. Second, there’s the question of how/when you make the selections if you make them at all. So you might find preconception more tolerable. But when you say that (or when one says that) it doesn’t seem to me to speak to the most basic questions about picking and choosing.

      My guess is that the vast majority of people would understand endorse some form of picking/choosing in some cases. If you discover, pre embryo transfer, that an embryo is fatally flawed and can never produce a child who will live beyond three months, most people would say (I think) that it is okay not to transfer that embryo. And most people would want to know about it before they unwittingly did transfer such an embryo. Because I think in extreme cases people will want this information and will want to act on it, we face the whole panoply of ethical/moral questions.

    • More to think about. Because it may be wrong should you ignore it? Would it depend on the odds that the information was wrong? Do you somehow multiply the risk that the information is inaccurate by the magnitude of the defect your thinking about? So % chance of a fatal defect might be more important to consider than a 30% chance of some other less serious defect?

  2. Julie – I think some choices will be pretty clean cut – Huntingtons disease or Tay-Sachs or any of those that you can test for – you could choose to do embryo testing to weed it out – or you could simply choose not to reproduce. I do believe if you are consciously choosing to reproduce you should get genetic testing for known genetic diseases such as CF etc by you and your partner. The same as any donors. To me it is better not to reproduce when the outcome is death whether early or horrible later.

    What I am leary of is the current level of testing for diseases that aren’t clear cut – they may confer a risk – but that risk level is unclear to unknown and in some cases require the environment to also be just right. To me that is simply fueling and filling the pockets of those offering the tests in the quest to create the perfect species. It also sets up the unrealistic expectations when there are so many thousands of genetic diseases where the gene(s) (and other factors) aren’t known to appear/be missed and that can be catastrophic. JQ Public is easily led to believe what they want to believe and that in itself can be dangerous and cause damage.

    My disease is thought to be genetic – there are several searching for the gene(s) – they haven’t found it/them. Like Marfan’s – it can be fatal and is also considered/thought/believed to be a connective tissue disorder. In this scenario – Marfan’s would be spotted – mine would be missed and the sense of false security could do more harm that good, because it is very easy to miss it. A complete and updated/accurate as possible family health history for the doctor to compare against symptoms and tease out the disease is still a better option and if necessary genetic testing to rule out / assist further. I say this because so many diseases have symptoms that are incredibly common across multiple disorders.

    • I agree with most everything you say here. The idea of genetic testing for people planning to have kids–even where they use their own gametes–is interesting to ponder. It’s a form of eugenics, I suppose, but it seems to me unreasonable to tell someone who knows they may carry a problematic gene that they have to take the chance of passing it along when they reproduce. Similarly, if you have someone who knows they carry the Alzheimer’s gene I cannot imagine telling them that they either have to take their chances with natural reproduction or use third-party gametes when instead of either they could use PGID to select a non-Alzheimer embryo.

      And yet once I say all that the worries you express come to the fore. People will be sold unnecessary genetic testing because someone makes money off of it, even as happens in so many other contexts today. People will have a false sense of security. And there is (and will remain) so much we cannot/do not know/understand.

      It’s very hard to draw the lines–even to figure out who should be drawing the lines and how. And yet this seems like an area where we might want to draw them sooner rather than later. Or maybe I’m just feeling a little pessimistic today.

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