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Questioning the Right to Know One’s Genetic Origins

The 10-year anniversary of the decoding of the human genome arrived this year with more of a whimper than a bang. What seemed a decade ago to be the infinite and prophetic potential of genomic science – to tell us who we are, where we came from, what diseases we will get, when we will die – has been brought down to earth with a gentle, if realistic, thud. Despite the uncertainties about the medical usefulness of genomic information, many of the ethical discussions about genetics and genetic testing continue to be driven by the idea that to know genetic information about oneself has particular moral value.

This idea has been especially apparent in discussions about the ethics of anonymous gamete donation, where the information at issue concerns not the genes one carries, but the sources from which those genes are thought to have come. Some have even argued that access to such information should be protected as a right.

Certainly, information about one’s origins may be important. The contingencies of our births affect what we know, think we know, and don’t know about ourselves, and such information surely has relevance for how we go about making life decisions. I am deeply troubled, however, by the increasing prominence of “right to know”-based approaches to ethical analyses of reproductive technologies. I am even more alarmed by what I see as a lack of thorough interrogation – let alone basic questioning – concerning the ground of such a purported right and the ends to which these arguments are being put. In short, it seems to me that arguments based on the right to know are being used in efforts to constrict how theright to reproduce can be exercised.

A recent essay in Bioethics Forum evidences this point despite its attempt to avoid the moral dangers that come with right to know arguments. Using empirical studies of anonymously donor-conceived people’s feelings about their conception, Vardit Ravitsky and Joanna Scheib conclude that mechanisms for preserving and promoting access to information about gamete donors – i.e., registries – should be created and maintained. While I appreciate the authors’ attention to the experiences of donor-conceived individuals, their self-proclaimed commitment to an evidence-based approach is either naïve or disingenuous.

Their commitment seems naïve given the logic of their argument, the centerpiece of which is the claim “[t]he human need to know where we come from includes a genetic component.” Even if true, this statement alone does not tell us what value we should place on this human need or how we should act in relation to it. In short, we cannot get from “includes a genetic component” to “requires a genetic component.”

Ravitsky and Scheib seem to be guilty here of making the classic fallacy of reasoning from “the is” to “the ought”: the data collected reveal much about the feelings of those interviewed, but they are insufficient to determine whether anonymous gamete donation is itself unethical. As the authors wish to put forward ethically grounded recommendations, rather than just practical or efficient ones, however, their argument requires more than just the evidence they claim to be relying on.

And this 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.

Unless, that is, only information about genetically related family is worthy of moral protection. My suspicion that Ravitsky’s and Scheib’s argument against anonymous gamete donation is built on such an idea gains credence when we look a bit more closely at the sources of their data. One of the surveys they cite is My Daddy’s Name is Donor, a report released by the Commission on Parenthood’s Future, a subgroup of the Institute for American Values. (Not only was this document not peer-reviewed, as Ravitsky and Scheib note; it was posted on the institute’s own blog, not published in a journal.)

That the institute has a clear definition of and investment in what counts as a family cannot be doubted. Among its four explicitly stated goals is one “to increase the proportion of children growing up with their two married parents.” A cursory glance at materials produced by the institute and the Commission on Parenthood’s Future is sufficient to show that “two married parents” doesn’t include gays or lesbians. What worries these conservative groups is not only that my Daddy’s name is Donor; it’s that my Daddy’s name might be Sally.

Ravitsky and Scheib may not share the Institute for American Value’s agenda. But their article illustrates how arguments against donor anonymity – even those attempting to argue from evidence – can entail a commitment to a belief about the importance of genetic origins that, in turn, is grounded in a particular definition and valuation of family. 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.

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.

Kimberly Leighton is an assistant professor of philosophy at American University.

Published on: September 27, 2010
Published in: Emerging Biotechnology, Science and Society

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