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Perception of Direct-To-Consumer Genetic Testing and Direct-To-Consumer Advertising of Genetic Tests among Members of a Large Managed Care Organization

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Journal of Genetic Counseling

Abstract

This small qualitative study was designed to determine possible attitudes toward and understanding of direct-to-consumer (DTC) genetic testing among members of a large managed care organization, and whether differences might exist between population groups. Ten focus groups were conducted by population type (high risk, White, African American, Hispanic/Latino) to determine knowledge, attitudes and beliefs about DTC genetics. Focus group transcripts were coded for attitudes toward and framing of the issue. Study results found participants were negative towards DTC genetic testing but they also found some aspects useful. Participants framed the issue mainly in terms of disease prevention and uncertainty of reaction to results, with some variation between population types. The concept of an “Informed Consumer,” or process to seek information when the issue becomes personally relevant, emerged. This concept suggests that individuals may seek additional assistance to make personally-appropriate choices when faced with a DTC advertisement or genetic test.

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Acknowledgments

This study was funded by the National Cancer Institute, contract 5U19 CA079689, “Cancer Research Network Across Health Care Systems” (Edward H. Wagner, MD, MPH, Principal Investigator). The HMO Cancer Research Network (CRN) consists of the research programs, enrollee populations and databases of 14 HMO members of the HMO Research Network. The overall goal of the CRN is to conduct collaborative research to determine the effectiveness of preventive, curative and supportive interventions for major cancers that span the natural history of those cancers among diverse populations and health systems. The 14 health plans, with nearly 11 million enrollees are distinguished by their longstanding commitment to prevention and research, and collaboration among themselves and with affiliated academic institutions. Funding for this study was provided as part of the CRN Pilot program.

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Correspondence to Alanna Kulchak Rahm.

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Rahm, A.K., Feigelson, H.S., Wagner, N. et al. Perception of Direct-To-Consumer Genetic Testing and Direct-To-Consumer Advertising of Genetic Tests among Members of a Large Managed Care Organization. J Genet Counsel 21, 448–461 (2012). https://doi.org/10.1007/s10897-011-9477-3

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