Lay constructions of genetic risk

Abstract

The paper reports one aspect of research on women (mothers and daughters) in families with Duchenne Muscular Dystrophy (Duchenne), a genetically transmitted disorder. The data were collected by means of extended unstructured interviews with the women, all of whom had had either a brother or a son who had inherited the disease. All the women have been defined by medical professionals as having a specific ‘risk’ of carrying and transmitting the defective gene. Their lay understanding of carrier risk rates is explored. There are fundamental differences between medical and lay understandings of the statistical issues involved. The discrepancies may have important consequences for the women's reproductive behaviour. The implications of genetic risk for spoiled identity on the part of some women are also described.