Disclosing genetic test results to family members

R. J. Hamilton
B. J. Bowers
Janet K. Williams, University of Iowa


PURPOSE: To describe the experiences of disclosing genetic test results to biological family members among people tested for Huntington's disease (HD) or hereditary breast and ovarian cancer (HBOC). DESIGN: Grounded theory methodology. METHODS: Open-ended, tape-recorded interviews were conducted with 29 participants-24 who had received genetic test results and 5 who had decided not to be tested. The participants were from three countries, including 15 U.S. states. Interviews occurred from 2 months to 4 years after receiving test results. Tapes were transcribed and analyzed for conceptual categories to describe the experience of disclosing genetic test results. FINDINGS: Participants described the effects and meaning of disclosing test results to their various family members, and they selectively disclosed results to family members. The timing of disclosure was influenced by the particular disease and the person's perceived need to prepare. Disclosure of genetic test results brought the risk of HD and HBOC to the foreground, not only for the person tested but for family members as well. CONCLUSIONS: This study elucidated the perspective of the "discloser" and the consequences they anticipated and experienced.