Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience

June 2017 | Sarah E. Gollust, Stacy W. Gray, Deanna Alexis Carere, Barbara A. Koenig, Lisa Soleymani Lehmann, Amy L. McGuire, Richard R. Sharp, Kayte Spector-Bagdady, Na Wang, Robert C. Green, J. Scott Roberts, for the PGEN Study Group | Original Investigation

Policy Points:

  • The policy context of direct-to-consumer personal genomic testing (DTC-PGT) has been evolving over the last decade, with little empirical data available about consumers’ perspectives.
  • A majority of consumers of DTC-PGT supported expanded access to services and their integration into the medical context and opposed more governmental regulation.
  • Consumers’ attitudes about access to services and regulation did not vary based on the specific genetic risk information they received from companies, but may vary based on whether consumers perceived their DTC experience negatively.

Context: While policymakers have been considering the appropriateness of direct-to-consumer personal genomic testing (DTC-PGT) for more than a decade, there is little empirical data on consumers’ views regarding the regulation of these products. No research has assessed whether consumers’ personal experience with testing is related to their views about access to and regulation of DTC tests.

Methods: Data were analyzed from the PGen Study, a longitudinal prospective cohort of DTC-PGT customers of 23andMe (n = 564) and Pathway Genomics (n = 377; total N = 941). Consumers were sent an electronic survey before receiving genetic test results and again 6 months after receipt of results.

Findings: At the 6-month follow-up, more than 80% of participants believed that people have a right to access genetic information directly, that parents should be able to get DTC-PGT testing for their children, and that genetic information should be kept private. Participants supported health insurance coverage of PGT (60%), wider availability of PGT (68%), and inclusion of genetic information in medical records (63%). Participants were less supportive of government regulation (28%) and restricting testing to clinical settings (14%). Conservative political ideology was associated with less support for government regulation (P < 0.001), as was feeling more confident in one’s genetic knowledge (P < 0.05). Participants’ level of computed genetic risk for common diseases, as indicated by their actual test results received from companies, showed no relationship with attitudes. However, those who perceived that they had received elevated risk results expressed lower support for expanded availability and incorporation of PGT into health care (P < 0.01). Those who reported being upset by their genetic test results were less likely to endorse access to DTC products without a medical professional (P < 0.01).

Conclusions: PGT consumers supported expanded access to these services and opposed additional regulation. Users who had a negative personal experience with PGT testing were less supportive of expanded availability without a medical professional.

Keywords: genetic testing, ethics, regulation, public opinion.

Read on Wiley Online Library

Volume 95, Issue 2 (pages 291–318)
DOI: 10.1111/1468-0009.12262
Published in 2017