Carriers: genetic knowledge and the emergence of a new biosocial identity

• Applicant: Privatdozent Dr. Peter Wehling
• Subject Area: Sociological Theory
• Term: from 2015 to 2020
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 275165774

The research project focuses on the social contexts, implications and effects of expanded carrier screening (ECS), a genetic technology which emerged in recent years. ECS aims at providing couples, who wish to have children, with information, ideally prior to a pregnancy, whether both of them carry the genetic variant for the same recessively inheritable and usually rare condition, which means that both of them are „carriers“. In this case each child of the couple would have a 25 percent chance of inheriting the disease-related variant from both parents, whereas the carriers themselves are asymptomatic and not at risk of being affected by the condition. Given the fact that almost all humans are held to be carriers of at least one recessive genetic variant, the whole population becomes the target group of ECS.ECS has been developed by commercial laboratories and, since 2009, is offered directly to consumers via the internet. In the project it was analysed how the emerging social category of carriers is shaped by ascribing specific risks, responsibilities and agency to them in commercial marketing as well as in medical and bioethical discourse. In addition, it was investigated to what extent such framings are adopted, modified or rejected in self-interpretations of individuals or couples. There is evidence that the fact of being a putative carrier is rarely understood in terms of an identity but rather linked to assuming highly gendered and subjectifying responsibilities which are held to result from carrier status. However, the aim of testing individuals or couples who are asymptomatic and do not have a family history of genetic disease even prior to pregnancy to date appears to meet a lack of interest among the target group. Therefore, strategies of „successfully“ motivating the target group are crucial both for the uptake of ECS and its social effects.The need for additional research results from two recent developments which both are able to substantially transform the current market-based features of ECS. Both the international debates on „responsible“ and „successful implementation“ of ECS in public health services which have started around 2015 and the simultaneous tendencies and efforts to combine carrier screening with other reproductive or genetic technologies are likely to produce novel forms of targeted communication, responsibilisation and gender asymmetries. Analysing these developments will therefore add to and complement the project’s research focus in a crucial manner. Moreover, it will also provide important insights for discussions on the implementation of ECS which might come up in the near future in Germany as well.

• DFG Programme: Research Grants