Data Donations for Advancing Medical Research: Mitigating the Negative Effect of Privacy Concerns

It is only in the past few years that the medical community has recognized the promise of data donations, whereby individuals are encouraged to donate their data for medical research. Data donations could lead to a revolutionary change in advancing medical research. The change, however, will likely be hindered due to individuals’ privacy concerns. We draw upon related research and recent privacy theories and distinguish between normative (i.e., privacy controls) and non-normative (i.e., empathic concern) factors that can be leveraged by the medical community to increase data donations despite the presence of significant privacy concerns. We conducted an online experiment using screen mockups of a mobile app designed for data donation. The findings indicated that the negative effect of privacy concerns on data donation decisions can be mitigated by providing donors with granular privacy controls and/or inducing their empathic concern. We discuss the theoretical, practical, and ethical implications of these findings.