Genetic testing and risk perception in the context of personalized medicine. how familial relationships matter?

Predictive health medicine recontextualizes medical decision-making. Whilst the handling of predictive genetic information raises a broad range of ethical questions, this chapter is concerned with the supra-individual implications of genetic testing. In particular, with regards to genetic decision-making there is a tension between individual accounts of autonomy (which dominate bioethical discourses) and family members’ genetic interrelatedness which transcends the logic of individual decision-making. The mere availability of genetic information can impose severe psychosocial and economic burdens on families. Ethical reflections on genetic testing must take these familial interdependencies into account.

To this end, this chapter will discuss different aspects of family responsibility and how these present challenges to decision-making about genetic risk information. We will challenge ethical frameworks that exclusively focus on the autonomy of individuals and discuss the relevance of reciprocity and solidarity as alternative frameworks in the context of genetic testing. These theoretical reflections will be illustrated by empirical data relating to predictive testing for particular diseases. In this way we will argue that intra-familial problems particularly arise a) when genetic knowledge challenges established familial practices of reciprocity and solidarity; b) when acquired practical experiences with specific diseases within the family influence genetic knowledge; and c) when genetic technology challenges prevalent understandings of family or even human nature in general.