To share or not to share and with whom? Personal responses to consumer genetic testing

The utility of consumer genetic testing will depend on the extent to which participants learn about their disease risks, share their results with health care providers to inform medical care, and take personal action to reduce their risks for diseases. As part of an ongoing, longitudinal study on personal responses to consumer genetic testing, this study set out to examine whether consumers share their genetic results, with whom they share, and possible reasons for not sharing. To date, 986 participants (mean age = 47, 58% female) have responded to a survey six months following testing from one of two consumer genetics companies. Overall, 95% of respondents indicated they had discussed their results with someone. Among those who shared results, 96% had discussed with family members, 75% with friends, and 35% with co-workers/colleagues. Only 28% reported discussing their results with a primary care provider (PCP) and 3% with a genetic specialist. Reasons for not sharing results with PCPs included not feeling that results were important enough to share (44%) and not yet having the chance to see a provider (40%). Concern about results being placed in medical records was endorsed by only 9% of respondents. Preliminary findings suggest that although consumers overwhelmingly share their results with family members, considerably fewer share their results with health care providers. Reasons for not sharing are not due to concerns about privacy per se. The utility of personal genetic information will likely vary to the extent consumers share their results with medical professionals.