Attitudes about regulating consumer genetic testing services: Views from users

While experts in genetics and bioethics have deliberated over regulatory approaches for consumer genetics services for over a decade, the opinions of users of these services have been elusive. As part of a longitudinal study, we examined attitudes of customers of two consumer genetics services. To date, 950 respondents completed the third wave of the survey (October 2012-March 2013), fielded 6 months following genetic testing. Respondents expressed strong enthusiasm for direct access to testing: 90% agreed people have a right to access genetic information without going through a medical professional; 80.6% agreed parents should be able to get results for their children. Most (58.6%) agreed insurance should cover consumer genetic testing, 62.8% agreed genetic information should be part of the standard medical record, and 67.7% agreed genetic tests should be available more widely. Only 27.3% agreed (10.9% strongly, 16.5% somewhat) that the government should put more effort into regulating testing. Respondents who reported they received many or all high-risk results (14% of total) were significantly more likely to indicate that insurance should cover testing (p=0.03) and that information should be part of the medical record (p=0.01). Overall, a majority of users of consumer genetics services are opposed to regulation limiting access to genetic testing. Receipt of high-risk test results was associated with believing more strongly in the integration of consumer genetics information into standard clinical care.