Meanings and Practices of Prenatal Genetics in Germany and Israel (PreGGI). A comparative empirical and prospective study of the views and ethical concerns of users, non-users and providers of prenatal genetic services in their social and cultural contexts

• Applicants: Professor Dr. Christoph Rehmann-Sutter; Professorin Dr. Christina Schües
• Subject Area: Empirical Social Research ; Practical Philosophy
• Term: from 2016 to 2021
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 314959264

The practices and social understandings of prenatal genetic testing are currently undergoing transformations that seem to be triggered primarily by two strands of technological development: (1) non-invasiveness of testing (access to fetal DNA through the womans blood) and (2) comprehensiveness of testing (arrays and DNA sequencing). However, other factors are important as well, such as previous local practices and governance, historical contexts, religious and cultural understandings and the values in a society. Prenatal genetics is seen differently in Israel and in Germany, reflecting culturally specific medico-legal policies and public moralities. The proposed study takes a comparative approach to these two countries. It aims to understand the interrelatedness of social and technological change in prenatal genetics and its meaning for individuals and societies, looking to developments in human genetics and genomics that can be expected in the future. Overall, the project combines three perspectives: (1) an empirical perspective, using comparative and qualitative social research methods, reconstructive social philosophy and empirical bioethics; (2) a theoretical philosophy perspective, conceptualizing the interrelation between the cultural and the social, and the functioning of key concepts such as life or human conditions; and (3) a prospective perspective, creating an open and discursive philosophical platform to further the understanding of the cultural, anthropological and ethical meanings of prenatal genetics. At the centre of the first empirical work package is a qualitative interview study (2 x N=50-55) in Israel and Germany, using Grounded Theory methodology and interviews with healthcare professionals, users and explicit non-users of either non-invasive prenatal genetic tests or arrays/sequencing, adult children born after being tested, patient organizations, policy makers, and representatives of testing companies. Both the comparative empirical study and the reconstructive cultural philosophy provide the basis for a prospective, open Israeli-German philosophical platform on the ethics of prenatal genetics, which can be sustainable beyond the lifetime of the project. The platform, with scholarly representatives from both countries, will work on hypotheses and concepts that appear on the horizon of genetic research and societal developments and will publish its discussions to foster public, academic and political discourse. By considering the different approaches of Israel and Germany, this comparison will for the first time provide a profound understanding of the sociotechnical dynamics and practices that lead to the transformation of generative relationships and of the social construction of normativity in prenatal human genomics. This study contributes to the cultural cooperation between Germany and Israel. Its results will matter in both countries and could be exemplary elsewhere.

• DFG Programme: Research Grants
• International Connection: Israel
• International Co-Applicant: Professor Dr. Aviad Raz