Awareness and uptake of direct-to-consumer genetic testing among cancer cases, their relatives, and controls: the Northwest Cancer Genetics Network.
OBJECTIVE
To determine if awareness of, interest in, and use of direct-to-consumer (DTC) genetic testing is greater in a sample of high-risk individuals (cancer cases and their relatives), compared to controls.


METHODS
Participants were recruited from the Northwest Cancer Genetics Network. A follow-up survey was mailed to participants to assess DTC genetic testing awareness, interest, and use.


RESULTS
One thousand two hundred sixty-seven participants responded to the survey. Forty-nine percent of respondents were aware of DTC genetic testing. Of those aware, 19% indicated interest in obtaining and <1% reported having used DTC genetic testing. Additional information supplied by respondents who reported use of DTC genetic tests indicated that 55% of these respondents likely engaged in clinical genetic testing, rather than DTC genetic testing.


CONCLUSIONS
Awareness of DTC genetic testing was greater in our sample of high-risk individuals than in controls and population-based studies. Although interest in and use of these tests among cases in our sample were equivalent to other population-based studies, interest in testing was higher among relatives and people who self-referred for a registry focused on cancer than among cases and controls. Additionally, our results suggest that there may be some confusion about what constitutes DTC genetic testing.
Institute for Public Health Genetics, School of Public Health, University of Washington, Seattle, Washington 98115, USA.
Taryn O
TO
Hall
Anne D
AD
Renz
Katherine W
KW
Snapinn
Deborah J
DJ
Bowen
Karen L
KL
Edwards
D003625:Data Collection; D005260:Female; D005500:Follow-Up Studies; D005821:Genetic Techniques; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D009369:Neoplasms; D012042:Registries; D014481:United States