Yesterday I pointed to an article by New Scientist editor Michael Le Page advocating routine carrier testing for severe disease genes in parents-to-be, followed by IVF and pre-implantation genetic screening of embryos for couples unfortunate enough to both be carrying mutations in the same gene. I asked for well-reasoned objections to this approach from commenters.
Razib responded with a post at Gene Expression. Firstly, he pointed out that well-reasoned objections are not what matters in this debate:
…though reason is the “front side of the house” in this discussion, the
real work is being done by intuition in concert with social consensus
in the kitchen.
and that pragmatic concerns will play a bigger role in building society’s view of these technologies than sophisticated moral arguments:
The best way to be on the “right side of history” in this sort of
discussion isn’t to argue in bioethics journals, it’s to make sure that
the cost of the procedure comes down and its marketing makes it seem
innocuous, or the inverse if that is your position.
I completely agree – I’ve argued in the past that the current widespread taboo against pre-natal screening will ultimately be eroded by pragmatism, if and when it becomes clear to parents that screening provides a higher probability of good outcomes for their children (a desire that out-weighs virtually any religious proscription). My ambition here is not so much to seek a knock-down argument for universal screening as to convince myself what the appropriate ethical stance is for me to take regarding these technologies.
John Hawks also contributed a long and thoughtful comment pointing out that the cost-benefit equation is not as simplistic as Le Page proposes. Hawks’ costs include the financial burden of IVF and the fact that IVF still has a high failure rate relative to normal conception (for fertile couples) – these are perfectly fair, but it’s worth noting that under Le Page’s proposal only those parents who both carry known disease-causing mutations in the same gene would be encouraged to pursue IVF and PGD. For most couples the only cost would be carrier screening, which could probably be provided at a cost under a thousand dollars using a chip-based assay, including the cost of validation assays for positive results (I’m assuming a substantial cost saving due to volume if the test was offered as routine). The costs of IVF/PGD would then only be borne by couples who were advised that they were both carriers of mutations in the same gene, and who chose to undergo these more arduous screening processes to ensure that they did not carry an embryo with two mutated copies to term.
One of the most interesting impacts of routine genetic screening that Hawks notes (and that I’ve discussed previously) is the burden of guilt and social condemnation carried by parents who choose not to undergo screening or not to act on information they receive, and then give birth to a disabled child:
The argument also ignores the suffering of people who face the
opprobrium of society for their choice not to have the test performed.
At present, this is considered to be bad luck. The change toward an
attitude of parental negligence has already begun for parents who
choose to complete Down syndrome pregnancies.
There is no question that this will become a very real issue as the availability of severe disease screening increases over the next few years. Whether it serves as a powerful argument against the use of screening, however, is another matter. To return to Le Page’s analogy, there are some parents who would prefer to let their child die than to allow them to be “poisoned” by antibiotics, blood transfusions or other modern treatments; does the social condemnation suffered by these parents serve as a good argument against the routine use of antibiotics?
I don’t have time to respond right now to several other excellent points made in the comment thread, but hope to get back to them later. For the moment I will simply acknowledge that there is no simple ethical road here, and that it will be crucial (as Hawks points out) to perform a thorough cost-benefit analysis incorporating financial, social and emotional factors. Regarding the financial aspect I recommend a 2006 article by Armand Leroi (pointed to by commenter Carl Shulman) that is well worth a read.