Direct to consumer genetic testing: users’ experiences of testing for disease risk and clinicians’ perceptions of its impact on genetics services.

Direct to consumer genetic testing (DTCGT) for disease risk is now widely available to purchase online to those who have the means. Those in favour of DTCGT champion the rights of individuals to access their genetic information, while many medical professionals think a vulnerable public needs to be protected by regulation. Neither of these views is evidence-based, but they reflect changes in society that the growth in personalised medicine is driving. Using semi-structured interviews, this research will explore UK users’ motivations and expectations of DTCGT for disease risk and its impact on them and their families. In addition it will explore clinical genetics professionals’ perceptions of DTCGT’s impact on users, to draw out the implications of DTCGT for users, professionals and the NHS.

Selected Recent Publications

Finlay TMD, Gibson S, Koch L, Tochetti S (forthcoming) Personal genomics: transparent to whom? IN Rehmann-Sutter C, Dreyer M, Erdmann J (Eds) Genetic Transparency? Ethical and Social Implications of Next Generation Human Genomics, Brill Rodopi, Amsterdam.