‘It's their blood not mine’: Who's responsible for (not) telling relatives about genetic risk?

Abstract

With advances in the ‘new genetics’, an increasing number of people will have access to genetic information and predictive or susceptibility testing. Genetic knowledge has implications for individuals themselves, as well as other family members. In general, health professionals encourage people to pass on genetic risk information to their relatives. However, the disclosure of such information is not always straightforward and, consequently, some people may not be aware of their risk. If risk information is actively withheld, genetic counsellors may need to determine whether they have a duty to pass this on, particularly when preventive action can be taken. To date, little research has explored the barriers and facilitators in family communication about genetic risk. This paper draws on empirical data from a qualitative study exploring communication in families with late-onset familial disease. Interviews were conducted with participants who received genetic counselling for risk of Huntington's disease and hereditary breast or ovarian cancer. Participants' experiences of who was responsible for (not) telling relatives in their families is studied. A number of themes were identified. These were: (1) ‘whose place is it to tell’, (2) the gendering of disclosure, and (3) who is ‘family’. The implications of these findings are considered.