This supplemental research project will assess how the sex and gender differences inherent in non-targeted Fragile X genetic carrier testing influence men and women?s perceptions of their own health and reproductive decisions. In the course of our research for the ?Anticipating Personalized Genomic Medicine? R01 grant we have learned from scientific, clinical, and commercial promoters of personalized genomic medicine (PGM) that there may be important gender differences in the integration and implications of genetic risk information into biomedical and public health strategies, particularly in the realm of reproductive genetic carrier testing. However, this remains underexplored in our current project. The expansion of Fragile X Mental Retardation 1 (FMR1) carrier testing is an apt illustration of the shifting orientation of reproductive carrier screening towards population-level approaches to personalized risk assessment, and will serve as an exploratory case for how sex and gender influence the integration of PGM into the reproductive setting. This project will utilize qualitative interviews to explore how couples who have received non-targeted Fragile X carrier testing make reproductive decisions depending on the sex of the FMR1 carrier and/or their prospective offspring. It will also serve as a guidepost for responsive integration of complex and morally fraught genetic risk information into reproductive health care

Public Health Relevance

This supplemental project will contribute to a greater understanding of the implications of sex differences for couples? considerations of personal health risks and reproductive genetic risks through interviews with prospective parents. Although this project is focused on Fragile X testing, it will extend the goals of the parent grant by illustrating the gendered complexity and moral consequences of the expansion of PGM to the shifting mix of population-based reproductive genetic testing programs.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Research Project (R01)
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Special Emphasis Panel (ZRG1 (02))
Program Officer
Boyer, Joy
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University of North Carolina Chapel Hill
Other Health Professions
Schools of Medicine
Chapel Hill
United States
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