'Wayward Relations: Novel Searches of the Donor-Conceived for Genetic Kinship' by Maren Klotz in (2015)
Medical Anthropology. Cross-Cultural Studies in Health and Illness comments
Searching and finding supposedly anonymous sperm donors or half-siblings by diverting direct-to-consumer genetic testing is a novel phenomenon. I refer to such new forms of kinship as ‘wayward relations’, because they are often officially unintended and do not correspond to established kinship roles. Drawing on data mostly from the UK, Germany and the US, I argue that wayward relations are a highly contemporary means of asserting agency in a technological world characterized by tensions over knowledge acquisition. I make a case that such relations reaffirm the genetic grounding of kinship, but do not displace other ways of relating—they are complementary not colonizing. Wayward relations challenge the gate-keeper status of fertility clinics and regulators over genetic knowledge and classical notions of privacy.
Klotz argues
Wayward relations belong to the digital age. They reaffirm the traditional notion that genetics can establish relationships, but with a distinctly “21st-century complexion”—in Edward’s (2009:5) words about ancestry research in times of the Internet. The combination of intimacy and latency of wayward relations, as discussed above, seems to resonate with the typical sociability of Web 2.0 relationships in general. Moreover, the World Wide Web and its defining capacity to network large numbers of people, with huge amounts of data, bridging vast physical distances, is crucial infrastructure for wayward relations. Vital is the compatibility of kinship information in its contemporary Western version of DNA ‘code’ with digital information technologies (Klotz 2012): Both are rooted in the Information Discourse of the 1950s (Kay 2000), and the so-called genetic code, in its discreteness, affords further computerized processing. This implication of kinship with IT has helped to enable a growing genetic genealogy sector, operating via the internet, and to make available direct-to-consumer genetic testing for hobby ancestry research and for the online calculation of risk susceptibilities (Hauskeller 2006).
On a practical level, a challenge to classical notions of privacy protection arises from this development. Sperm donation has a history of rousing dystopian journalistic and artistic visions of how meetings or ensuing relationships between donors and children might look, probably because it questions normative concepts of the European family (Klotz 2007; Cook 2002). However, there is no evidence of donor-conceived persons stalking their donor or their donor- siblings. The most common points of real-life conflict among involved persons seem to be conflicts between parents and their children after late and accidental discoveries of the donation, and disagreements on social roles between donors and parents in informal rather than clinical arrangements. Furthermore, sometimes it might be enough for donor-conceived persons to collect information, without making contact with a donor or pursuing in-depth relationships. Nevertheless, most national regulations of gamete donation are based on temporary or permanent donor-anonymity and on guarantees of this to donors and parents.
The ‘informational uncontainability’ of kinship knowledge (Klotz 2012) is not only a challenge to gate keepers of such knowledge in the domain of assisted reproduction. Medical research involving genetic data is facing a general problem of maintaining participant’s privacy, leading to the recent closure of several public access online DNA databases in the US and Britain after scientists demonstrated their ability to mine specific genetic profiles of individual patients (Homer et al. 2008; NatureNews 2008). More recently, Y-chromosome testing and surname inference, using supposedly anonymous genomic data and genetic genealogy websites, has enabled the full identification of supposedly anonymous men who donated their DNA for scientific research (Gymrek et al. 2013). Such developments might not only be problematic from a legal standpoint, in cases where full anonymity has been guaranteed to participants, but also in a more immediate social sense. Studies on response patterns to pathogens or disease susceptibilities, for instance, might yield highly sensitive data for some persons (Angrist 2013, Hoeyer 2012).
These developments underline the relational character of genetic information. As Strathern (2005:36) has argued, this information can be intensely private, intensely collective, and intensely political at the same time. And such retreating regimes of anonymity point to a potentially diminishing domain of privacy (Edwards 2009). The practical and ethical challenges arising from incidents as discussed above are currently causing controversial debates within genomics: with some scholars calling for a ‘post-privacy’ or ‘open-source’ approach to research, while others would like to strengthen privacy protection in the face of advances in genetic testing technologies (e.g. Angrist 2013). The aim of this article has been to add my account of wayward relations to anthropological analyses of relationships. Nonetheless, medical anthropology’s strength of engaging in bioethical debates without perpetuating some of its individualist and ethnocentric biases (e.g. Konrad 2005; Kleinman 1995) suggests that its scholars—we, that is— should also try to add to a further debate in the future, namely to that of changing landscapes of transparency and anonymity.
Downplaying geneticization and dystopian visions of donor-conceived persons stalking their donors thus does not mean adverting one’s eyes from the slightly uncanny potential of wayward relations. As Edwards (2009) points out, the astonishing potency of searching for kinship in the age of interoperable IT and genetic kinship has a curious side, not because such searches tend to promote the colonizing effects of genetics, but because they have the potential to colonize (human) connections. The answer to this might not be to erect even more authoritative regimes of managing genetic knowledge, but—following the ethos of an anthropological bioethics (Muller 1994)—to re-think what normative concepts these regimes were established to uphold. Clinically or publicly protecting Euro-American notions of exclusive bi-parental parenthood perhaps does not need to be part of such a rethinking of privacy, but protecting individuals from genetic discrimination in a stratified world would have to be.
