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Analysis Explores Participants in Studies of Personal Utility of Genetic, Genomic Testing

In JAMA Network Open, investigators at Stanford University School of Medicine and Northwestern University Feinberg School of Medicine present findings from a systematic review focused on demographic features of individuals participating in studies looking at the personal utility of genetic and genomic testing performed in a health-related context. Based on data for almost 13,300 participants in dozens of studies, the team found that nearly 71 percent of personal utility study participants were described as female or women, while more than 76 percent were white, more than 67 percent had above-average income in the US, and nearly 65 percent had a college degree or higher level of education. "The results of this systematic review suggest that our understanding of the personal utility of genetics and genomics is disproportionately based on the perspectives of white women with a college education and above-average income," they write. "To achieve the National Human Genome Research Institute goal of 'equitable use of genomics in healthcare that avoids exacerbating and strives towards reducing health disparities,' we need to both collect diverse genomic data and better understand diverse perspectives on the value of these data."