Changing Regimes of Anonymity in Gamete Donation
Prof. Dr. Michi Knecht, Universität Bremen
SP 2 ethnographically investigates changing regimes of anonymity in gamete donation in Germany, the UK and the USA. The field is exemplary for a massive cultural shift in regimes of anonymity within only three decades (see Klotz 2014; Konrad 2005; Knecht and Klotz 2012). Whereas anonymity had been a mandatory precondition for medically controlled sperm donation since the 1970s, current anonymity regimes in gamete transfer have pluralized and developed quite differently in the USA, the UK and Germany. In the USA, they have been transformed into issues of choice and design. In the UK (since 2004) and in Germany (since 2008), they have become temporarily limited by policy in different ways, thus reconfiguring the relations of citizens and states as well as of genetically related and non-related kin.
Most countries have by now imposed limits on how many children an anonymous sperm or egg donor may give rise to. Regulation of anonymity regimes has also been affected by human rights discourses and legislation advocating for a right to know about genetic sources. Different forms of knowledge-networks have been built up with the intention of helping to identify previously unknown halfsisters, halfbrothers and genitors. DNA and information/knowledge about the circumstances of anonymous donation are case-specifically collected, stored and archived, linked and made accessible for search strategies in so called “donor-sibling registries”. Finally, anonymity regimes in egg and sperm donation have become explicitly controversial and politicized. Their regulation has become a conflicted issue, making infrastructures, regulations and social practices of doing and undoing, containing or expanding anonymity observable for ethnographic research.
The project will ethnographically focus on four kinds of archives and “donor-sibling registries” (DSR) and the infrastructures, regulations, and diverse social actor groups involved:
- In the UK, a DSR run by a centralized state regulator (HFEA, the Human Fertilisation and Embryology Authority) overseeing the use of gametes and embryos in fertility treatment and research
- In the USA, two privately run donor-sibling registries, one owned and operated by an IVF-clinic and another one organised and owned by a concerned group of donor-conception-families and young adults
- In Germany a de-centralised form of storing information with doctors, sperm banks, infertility clinics and concerned groups, which infrastructurally and legislatorial is still in its infancy. In all four cases, the ethnographic study of anonymity regimes will involve infrastructures and regulation in their historical development and participant observation of the political practices and knowledge practices of concerned groups, medical and legal professionals, families and donorconceived young adults.
The study asks: What are the effects of the designs of information data banks and networks and their import for various communities? How can one evaluate the debates about anonymity of sperm, egg and embryo donation with regard to infrastructures? How are online and offline search strategies and forms of knowledge management related? How are different forms of temporarily limited anonymity negotiated and valued by different actors? What are the dynamics of change in these regimes of anoymity?
Pivotal in the transformations of anonymity regimes in sperm donation are the political activities of concerned groups of donor families and young adults conceived with the help of genetic material from anonymized sources. The research will also follow their transnational activities and capture, how the donor-conceived start to form new social relations, identifications and a political voice, addressing issues of reciprocity, identifiability and (forced) accountability in public arenas.