Considerations for the Impact of Personal Genome Information: A Study of Genomic Profiling among Genetics and Genomics Professionals |
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Authors: | Julianne M O’Daniel Susanne B Haga Huntington F Willard |
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Institution: | (1) Duke Institute for Genome Sciences & Policy, Duke University, 450 Research Drive, LSRC B342C, Box 91009, Durham, NC 27708, USA |
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Abstract: | With the expansion of genomic-based clinical applications, it is important to consider the potential impact of this information
particularly in terms of how it may be interpreted and applied to personal perceptions of health. As an initial step to exploring
this question, we conducted a study to gain insight into potential psychosocial and health motivations for, as well as impact
associated with, undergoing testing and disclosure of individual “variomes” (catalogue of genetic variations). To enable the
collection of fully informed opinions, 14 participants with advanced training in genetics underwent whole-genome profiling
and received individual reports of estimated genomic ancestry, genotype data and reported disease associations. Emotional,
cognitive and health behavioral impact was assessed through one-on-one interviews and questionnaires administered pre-testing
and 1-week and 3-months post-testing. Notwithstanding the educational and professional bias of our study population, the results
identify several areas of research for consideration within additional populations. With the development of new and less costly
approaches to genome risk profiling, now available for purchase direct-to-consumers, it is essential that genome science research
be conducted in parallel with studies assessing the societal and policy implications of genome information for personal use. |
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