Online Program

Attitudes about regulating consumer genetic testing services: Views from users

Monday, November 4, 2013 : 11:30 a.m. - 11:45 a.m.

Sarah Gollust, PhD, School of Public Health, Division of Health Policy and Management, University of Minnesota, Twin Cities, Minneapolis, MN
Stacy W. Gray, MD, MA, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, MA
Clara Chen, MHS, Data Coordinating Center, Boston University School of Public Health, Boston, MA
Joanna Mountain, PhD, 23andMe, Inc
Tanya Moreno, PhD, Pathway Genomics
Lisa Lehmann, MD, PhD, MSc, Center for Bioethics, Brigham and Women's Hospital
Barbara Koenig, PhD, Institute of Health & Aging, UCSF School of Nursing, San Francisco, CA
Richard Sharp, PhD, Department of Bioethics, Cleveland Clinic
Sarah S. Kalia, ScM, CGC, Division of Genetics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA
J. Scott Roberts, PhD, Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan 48109, MI
Robert C. Green, MD, MPH, Division of Genetics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA
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.

Learning Areas:

Ethics, professional and legal requirements
Public health or related public policy

Learning Objectives:
Describe consumers’ attitudes about access to and regulation of consumer genetics services. Demonstrate the impact of genetic test information on consumers’ attitudes about regulation of genetic testing.

Keyword(s): Genetics, Policy/Policy Development

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am an oncologist and cancer outcomes researcher at the Dana-Farber Cancer Institute. I have special expertise and have published in the fields of cancer genetics, communication and health care policy.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.