Abstract

Background: Anecdotal evidence from genetic counselors suggests that the disclosure of genetic risk information to relatives can be problematic. Research undertaken into family communication about hereditary breast/ovarian cancer (HBOC) suggests that most counselees do pass on this risk information to some of their relatives, particularly with regards to the results of genetic tests. However, if this type of risk information is withheld genetic counselors may need to determine whether they have a duty to pass this on, particularly where preventive action can be taken. Methods: Interviews with people who had attended genetic counseling for risk of HBOC, and their partners. The interviews explored whether different relatives had or had not been told their risk by consultants; the factors that influenced communication and views of who should tell. Results: In total 20 interviews were conducted with women who were given a high, moderate or low risk, and with some of their partners. Data related to telling or not telling different relatives will be presented. Respondents’ views about whose responsibility it is to pass on this type of information will also be explored. Conclusion: Unsurprisingly, the disclosure of risk information about HBOC to relatives is highly gendered. The majority of participants believed it was a family’s responsibility to pass on this information. In general, the view was that family members should alert relatives of their risk then encourage them to attend genetic counseling for more accurate risk information, although there were a few notable exceptions.