Abstract

Uncertainty around the value of and appropriate regulatory models for direct-to-consumer (DTC) genetic testing underscores the importance of tracking public awareness of these services. We analyzed nationally representative, cross-sectional data from the Health Information National Trends Survey in 2008 (n = 7, 674) and 2011 (n = 3, 959) to assess population-level changes in awareness of DTC genetic testing in the U.S. and to explore sociodemographic, health care, Internet use, and population density correlates. Overall, awareness increased significantly from 29% in 2008 to 37% in 2011. The observed increase in awareness from 2008 to 2011 remained significant (OR = 1.39) even when adjusted for sociodemographic variables, health care access, Internet use, and population density. Independent of survey year, the odds of awareness of DTC genetic tests were significantly higher for those aged 50–64 (OR = 1.64), and 65–74 (OR = 1.60); college graduates (OR = 2.02); those with a regular source of health care (OR = 1.27); those with a prior cancer diagnosis (OR = 1.24); those who use the Internet (OR = 1.27); and those living in urban areas (OR = 1.25). Surveillance of awareness—along with empirical data on use of and response to genetic risk information—can inform public health and policy efforts to maximize benefits and minimize risks of DTC genetic testing.

Highlights

  • Ongoing genetic discoveries and technological innovation during the past decade have appreciably expanded the availability of genetic tests related to health conditions

  • While proponents of DTC tests argue that individuals should have the right to access their genetic information in a private setting, critics argue that DTC genetic testing has significant risks, both to the individuals and to the health care system [1, 2, 4, 6,7,8,9,10]

  • To assess whether the observed increase in awareness held while controlling for sociodemographic characteristics, health status, Internet use, and population density we conducted a multivariable analysis on the combined 2008 and 2011 data (Table 2)

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Summary

Introduction

Ongoing genetic discoveries and technological innovation during the past decade have appreciably expanded the availability of genetic tests related to health conditions. Concomitant with the advancement of genetic science has been the development of two trends, the marketing of genetic tests directly to consumers (i.e., through paid advertisements in print media, television, and the Internet) and the direct availability of genetic tests to consumers (i.e., through the Internet) [1]. Regarding the latter, consumers can purchase genetic tests, often without involving their health care provider, that indicate personal risk for conditions ranging from trivial characteristics (e.g., earwax type) to serious health conditions (e.g., breast cancer, Alzheimer’s disease) [1,2,3]. While proponents of DTC tests argue that individuals should have the right to access their genetic information in a private setting (without going through the traditional health care setting), critics argue that DTC genetic testing has significant risks, both to the individuals and to the health care system [1, 2, 4, 6,7,8,9,10].

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