Since I started researching and writing about the new fetal gene tests that can detect Down syndrome and other disorders from a maternal blood sample early in pregnancy, the ads for Sequenom's MaterniT21 have been appearing regularly on my computer screen. Whatever you think about Sequenom, they have their online marketing together.
I'm writing about the new fetal gene tests not because I oppose them in some blanket way, but because I think that a robust conversation is necessary if our medical advances are to help us. In that conversation, we need to talk not only in narrow terms about the relative efficacy of these tests, but about the assumptions and wishes to which they appeal, the vision of health they present, and the broader social consequences of that vision.
And because the tests in question are products, it’s worth looking at the way these products are sold. The companies know this: their websites are slick, expensive-looking, carefully worded. These are acts of persuasion, subordinate to the goal of making a profit; and whether we like it or not, they are a part of our society's conversation about biomedicine, not outside it.
So in the spirit of continuing that conversation, I'll begin with a response to my last post, where I took issue with the idea that "90% of all fetuses with Down syndrome are aborted." I wrote that in fact 90% of all fetuses positively diagnosed are aborted. However, as I was quickly informed, even in the case of a positive diagnosis, the number of terminations ranges widely, from 50 to 90%, depending on the sample. These points were offered as part of a spirited Facebook discussion among bloggers, and though I (weakly) protested that the 50-to-90-percent thing was actually a figure I linked to, I accept the correction.
The numbers matter not only for the obvious reason that our deliberations should be based on the best data available, but also because they suggest the complexity of the situation. The 90% figure – whether claimed for all fetuses, or all fetuses diagnosed – implies a solid consensus, a slam dunk, almost like a recommendation. 67% is something else: it suggests a process of deliberation (as does the widespread refusal of amniocentesis, which only 2% of women currently use). By extension, it also suggests that a test may not automatically result in “peace of mind.”
It’s also important to realize that not all prenatally identifiable conditions are the same, and that prospective parents do not react the same way. These are not merely decisions about biology, but about values. So with Tay-Sachs disease, for example, there is far greater agreement among prospective parents about the need for prenatal testing and selective abortion.
This is unsurprising: Tay-Sachs is not only invariably fatal and incompatible with long life, but it is inheritable within a relatively small community. That means that there is likely to be shared experience of the disease, and an awareness of its possibility. Down syndrome, however, except in the very rare case of translocation trisomy 21, is not inheritable: it occurs at random. Therefore, it is far less likely that a prospective parent will have direct knowledge of Down syndrome.
What, then, will fill the gap? To ask the larger question: How will the conditions we seek to prevent be portrayed? And, as a corollary: How will the need to sell a product shape the portrait?
Posted in Assisted Reproduction, Bioethics, Biotech & Pharma, Disability, Eugenics, Genetic Selection, Human Rights, Media Coverage, Reproductive Justice, Health & Rights, Sequencing & Genomics
CommentsAdd a Comment