It’s something of a commonplace to suggest that genetics poses a number of problems both in and for bioethics as it’s traditionally done. One of the problems in bioethics is that there could well be times when giving genetic information to a person about himself based on a test that he’s had will mean, necessarily, giving information about others. This is ostensibly a breach of those others’ privacy. Working ths other way, it might be that there’s a clear reason to tell someone about his likely genetic inheritance based on a test that his brother had undergone, which is an ostensible violation of that brother’s confidentiality.
The problem for bioethics is – I think – is evident from this, and it’s that a lot of the time, bioethical problems are presented in terms of conflicts between individuals (or between groups, or coflicts between individuals and groups of individuals). This individualism works well enough when we’re concerned with problems about, say, distributive justice or infectious disease, because we can straightforwardly identify the loci of moral concern. But when it comes to genes… well, they just aren’t individualisable in the same way. Genetics is a messy business: learning that Smith is HIV+ tells you nothing much about Smith’s siblings, children and parents. Learning that Jones carries gene G might well. Problems of genethics spill over the edges.
And, of course, genetic tests can reveal who your parents are if you’re in doubt. In learning about your background, you may learn a whole bunch of other stuff. But just as important is the point that it’s taken as read that learning about your background is not only a right, but something important at all. We do set a lot of store by our genetic origins – but do we have to?
This question is prompted by a piece on Bioethics Forum by Kimberly Leighton, which questions some of the importance that we place on genetic origins. Ostensibly, Leighton is responding to a paper that argued against anonymous gamete donation, and suggests in the process that the paper’s concerns with genetic origins are questionable:
Giving such moral weight to genetic origins is not a politically neutral act; it has direct consequences for who counts as a father or mother and for what we recognize as a good family. In this way, arguments about anonymous gamete donation remind us that we must be vigilantly sensitive to how arguments about ethics contribute to society’s valuing and devaluing of individuals, their lives and their self-understandings. As such, we have a responsibility to ask to what extent our arguments about ethics are themselves ethical practices.
And this seems right – asking how we should manage genetic information does seem to smuggle in the claim that genetic information is a good thing to have; and when we’re talking about genetic families, we’re frequently taking for granted a whole range of background assumptions about the importance of genetic relatedness and genetic origin. But these assumptions are open to doubt:
[T]his is where we might begin to wonder whether Ravitsky’s and Scheib’s logical mistake doesn’t actually reflect their moral investments. To move as the authors do from the facts of individuals’ feelings about not having access to information about donor(s) to the moral claim that such information should be maintained assumes the truth of an additional premise: to know one’s origins is good.
In fact, their argument against the continuation of anonymous gamete donation practices requires both the moral valuing of origins and the moral privileging of genetic origins. If the authors were to believe, on the contrary, that what is important is the need to know one’s origins simpliciter, that is, whether they be cultural or genetic, a family made through anonymous gamete donation would surely be able to satisfy this need.
Arguments against anonymous gamete donation that uncritically value genetic heredity must be read for the way that they morally privilege a particular understanding of what counts as a person’s origins and for what the implications are of such valuation.
In short: it’s not obvious that knowledge about your genetic origins is important at all; and even if it is important, it’s not obvious that it’s overwhelmingly so. To stress genetic relatedness’ importance is to buy into a certain set of assumptions about the family and about parenthood that may well be political, and disputable.
It’s an interesting piece: well worth following the link.