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June 2017 (Volume 95)
Quarterly Article
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
December 2024
Dec 19, 2024
Back to The Milbank Quarterly
Policy Points:
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
