Psychological factors that determine people's willingness-to-share genetic data for research

Of all the information that we share, health and genetic data might be among the most valuable for researchers. As data are handled as particularly sensitive information, a number of pressing issues regarding people's preferences and privacy concerns are raised. The goal of the present study was to contribute to an understanding of people's reported willingness-to-share genetic data for science (WTS). For this, predictive psychological factors (eg, risk and benefit perceptions, trust, knowledge) were investigated in an online survey (N = 416). Overall, participants seemed willing to provide their genetic data for research. Participants who perceived more benefits associated with data sharing were particularly willing to share their data for research (beta = .29), while risk perceptions were less influential (beta = -.14). As participants with higher knowledge of the potential uses of genetic data for research perceived more benefits (beta = .20), WTS can likely be improved by providing people with information regarding the usefulness of genetic data for research. In addition to knowledge and perceptions, trust in data recipients increased people's willingness-to-share directly (beta = .24). Especially in the sensitive area of genetic data, future research should strive to understand people's shifting perceptions and preferences.