Abstract
An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were: 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.
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Acknowledgements
The design and conduct of this study was supported by the Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health in partial fulfillment of the requirements of the first author’s ScM degree at the Johns Hopkins Bloomberg School of Public Health. All authors had full access to the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. No authors had any conflicts of interest, including financial interests or affiliations relevant to the subject of this manuscript. These results were presented in part at the National Society of Genetic Counselors Annual Education Conference, Dallas, TX, 2010.
We would like to acknowledge the following individuals for their review of this manuscript: Joan Scott, M.S., C.G.C. (Director, Genetics and Public Policy Center at Johns Hopkins University); Gail Geller, Sc.D. (Professor, Department of Pediatrics and the Bioethics Institute, McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins University); Debra Roter, DrPH (Professor, Department of Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health); Dani Fallin, Ph.D., (Associate Professor, Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health); and Barbara B. Biesecker, M.S., C.G.C., (Associate Investigator, Social and Behavioral Research Branch and Director, National Human Genome Research Institute). No individual listed above received any compensation for their contributions.
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Singleton, A., Erby, L.H., Foisie, K.V. et al. Informed Choice in Direct-to-Consumer Genetic Testing (DTCGT) Websites: A Content Analysis of Benefits, Risks, and Limitations. J Genet Counsel 21, 433–439 (2012). https://doi.org/10.1007/s10897-011-9474-6
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DOI: https://doi.org/10.1007/s10897-011-9474-6