This morning I read an article about parents who are intentionally choosing to pass certain genes on to their children, but not in the way we’d expect. Some parents are selecting embryos for the presence of a disability. The article states that 3% of parents using new technology called preimplanation genetic diognosis (PGD) have done so to achieve pass on what the article calls a defective gene. It seems that most of these parents going this route are working to pass on two conditions in particular: dwarfism and deafness. Some doctors are refusing to use the technique, while others oblige.
I have 3 thoughts on the matter:
1. We’re talking about 3% of a very small group of people, so let’s refrain from talking about a “new trend” here. Journalists tend to overreact to the oddities they stumble across and cause a big stir about phenomena that may actually be pretty low impact in the grand scheme of things.
2. Though dwarfism and deafness are conditions I know precious little about, I suspect that they may be different from most other genetic abnormalities in at least one key way. Both have a strong tradition of rejecting the “pathological model” used to view their communities in favor of a “cultural model.” Individuals who take this cultural perspective do not see conditions like dwarfism or deafness as an exclusively negative thing – or even as a primarily negative thing – but as an condition that lends itself to a shared experience that is legitimate, valuable, interesting, and that brings an important dimension of diversity to our world. This seems like an important and relevant to this discussion, but is conspicously absent from the NYT piece.
3. A lot of attention is being given to the multidude of ethical issues associated with the hi-tech fertility treatments that are becoming more and more widely available. However most of this attention can be characterized as reactionary, sentimental, and overly politicized. There’s very little evidence of an actual ethical or scientific debate on these issues in the media, though I do hope some discussions are taking place somewhere – among philosophers, bioethicists, genetic reseachers trying to pass IRB (ha!). It’s easy to bristle at the thought of “tampering with nature.” To me, these issues are not the most interesting or the most urgent or the most important moral dilemmas facing us right now. I suspect they are serving an alternative purpose – the ethical distractor – taking our attention away from the the questions we should really be wrastling with. I probably won’t write about this again.
