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Understanding the Genetic Registry Experience (Davis, Henderson, Corbie-Smith)
Significance: Genetic registries are proliferating as investigators scale-up research on genetic and environmental data on individuals, but little is known of potential subjects’ attitudes toward and understanding of the creation and use of genetic information in genetic registries. Studies to date have included only a few questions on research participants’ perceptions of using registries, genetic databases, or biobanks, or have used hypothetical scenarios to elicit perceptions. This study will fill gaps in our understanding of potential subjects’ attitudes toward genetic registries by interviewing both individuals who accepted participation in four genetic registries and those who considered participation and then declined (the latter constituting a particularly understudied group). A subset of these individuals will be followed over time to assess their changing perceptions of the ELSI issues involved with long-term participation and invitations to join studies that use the registries. For both acceptors and decliners, we are examining the impact of subjects’ personal experiences on their perceptions of genetic information and specific types of genetic research. Because all respondents will have considered participating in a registry and many will have gone through the consent process, our sample is likely to be relatively well informed compared to other studies of the general population. This allows us to examine more closely how respondents understand genetically based environmental sensitivities, polymorphisms, and the relative contribution to health of behavior, environment, and genes. This project has two specific research questions:
Research Question 1. How do people who consider joining genetic registries understand the risks and benefits of registry participation and the creation, control, and use of genetic information?
Research Question 2. How do participants’ understandings of risks and benefits of participation and use of genetic information change over time; and how do these understandings differ by demographic characteristics?
Outcomes: To our knowledge, this is the first longitudinal study of genetic registry participants and those who decline participation. This study will answer questions regarding motivations and perceptions of registry joiners and decliners and their understanding of the agreement to participate. Understanding people’s concerns and hopes will improve the process of informed consent for such registries, and ultimately increase the likelihood of retention over time.
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