Sharing is About Caring? Motivating and Discouraging Factors in Sharing Individual Genomic Data

Reasons for individuals to (not) share their genomic data with human genomic research remain largely unexplored. We employ privacy calculus as our theoretical lens and conduct a ranking-type Delphi study among genomic data donors, genomics professionals, and health privacy experts to elicit 19 motivating and 17 discouraging factors that influence individuals’ willingness to donate their genomic data to human genomic research. Our results suggest that altruistic reasons form major motivators, whereas privacy concerns, trust issues, and a fear of adverse medical implications are major discouraging factors. We also see noteworthy differences in donors’ and nondonors’ rankings of motivating and discouraging factors. The study adds to ongoing research on health information disclosure and shows that genomic data, despite their unique characteristics, are not that different from other patient’s health information. The study also contributes to privacy calculus literature by highlighting the need to incorporate altruistic motivators into the privacy calculus.