Abstract
With the proliferation of direct-to-consumer genetic testing and the advent of personalized medicine, protecting genomic data and defining acceptable use cases is a pressing policy issue. Existing measures of public attitudes toward genomic data and how they should be handled rely primarily on single-item measures or ad hoc scales with unknown psychometric properties. In this paper, we rely on two surveys to develop a psychometrically sound genetic utility, inaccuracy, and privacy (GUIP) questionnaire, compare this measure to a single-item measure, examine how this measure varies across demographic and attitudinal factors, and explore its predictive power for genetic data sharing. The first survey was exploratory and included both open- and closed-ended questions to gauge genetic attitudes. We oversampled respondents with minoritized racial and ethnic identities (Black, Latinx, and Indigenous) to compare how identity relates to attitudes about genetics. The second survey facilitated a factor analysis on items developed from the open-ended responses, examined measurement invariance in the factor structure across racial and ethnic identities, and explored how the GUIP varies across demographic and attitudinal factors. Finally, we examined the GUIP as a predictor of genetic data sharing with physicians, medical researchers, pharmaceutical companies, and law enforcement and willingness to participate in genetic research.