Genetic risk and responsibility: reflections on a complex relationship

Responsibility is an important term to describe, understand and formulate moral assumptions related to the individual and social handling of risks. This paper examines three forms of emergence: an implicit moral, a descriptive-ethical and a normative-ethical one in the context of genetic risk. In social sciences and applied ethics, the term ‘responsibility’ has currently received attention by problematising how medicine or public health increasingly address ‘self-responsibility’ of patients and citizens. Furthermore, the responsible agency is descriptively or normatively utilised to describe the moral language of lay persons when addressing family responsibility in the case of disclosure of genetic information or genetic family planning. To systematise these different ways of how responsibility emerges, the paper provides a heuristic, conceptual matrix which allows to identify the underlying assumptions of moral agency, morally relevant social relationships and the temporal dimension of such agency. Exemplarily, the paper discusses how different dimensions of responsibility can normatively unfold for different types of genetic risk information despite everyday interpretations of a dominant type of responsibility.