Genetic Risk and Reproduction

Abstract

Research was conducted with women who had experience of Duchenne Muscular Dystrophy (Duchenne) in the family. Intensive, qualitative interviews were conducted with a two-generational sample of women. This paper concentrates on the reported experiences of women who became pregnant while being aware of medically defined genetic carrier risk. Three types of reproductive decision-making are identified: risk-taking, risk-refusing and risk modifying. It is argued that there is no simple relationship between women's genetic risk and their subsequent reproductive actions. Of more significance is the women's prior biographical experience, their interpretation of the information available to them, their definition of the situation, and their reproductive expectations. Genetic risk information, transmitted in the genetic counselling discourse, does not determine women's actions, which are accounted for in terms of an interpretative perspective.