Characteristics of Genomic Test Consumers Who Spontaneously Share Results With Their Health Care Provider

Abstract

The purpose of this study was to evaluate the characteristics of direct-to-consumer (DTC) genomic test consumers who spontaneously shared their test results with their health care provider. Utilizing data from the Scripps Genomic Health Initiative, we compared demographic, behavioral, and attitudinal characteristics of DTC genomic test consumers who shared their results with their physician or health care provider versus those who did not share. We also compared genomic risk estimates between the two groups. Of 2,024 individuals assessed at approximately 6 months post testing, 540 individuals (26.5%) reported sharing their results with their physician or health care provider. Those who shared were older (p < .001), had a higher income (p = .01), were more likely to be married (p = .005), and were more likely to identify with a religion (p = .004). As assessed prior to undergoing testing, sharers also reported higher levels of exercise (p = .003), lower fat intake (p = .02), fewer overall concerns about testing (p = .001), and fewer concerns related to the privacy of their genomic information (p = .03). The genomic disease risk estimates disclosed were not associated with sharing. Thus, in a DTC genomic testing context, physicians and other health care providers may be more likely to encounter patients who are more health conscious and have fewer concerns about the privacy of their genomic information. Genomic risk itself does not appear to be a primary determinant of sharing behavior among consumers.

ACKNOWLEDGMENTS

This work was supported in part by a NIH/NHGRI R21 grant (1R21HG005747; PI: Cinnamon S. Bloss, PhD), a NIH Flagship Clinical and Translational Science Award grant (1UL1RR025774; PI: Eric J. Topol, MD), and Scripps Genomic Medicine Division of Scripps Health. We acknowledge the support of Laura Ornowski, MS, of Scripps, who assisted with data collection, as well as Vance Vanier, MD, Michele Cargill, PhD, and Elana Silver, MS, of Navigenics, along with their genetic counselors and other staff who helped support the project.