Privacy in perspective: research participants' priorities and concerns related to sharing data generated in human neuroscience studies.

Abstract

The societal benefits from sharing and reusing data collected in human neuroscience studies are widely appreciated. However, there are persistent barriers to data sharing as well as privacy concerns related to unauthorized access, misuse, and reidentification of deidentified data. Thus far, few studies have been conducted with neuroscience research participants to understand their data sharing priorities and concerns. We conducted a survey utilizing an experimental design with N=52 participants in neuroscience studies funded by the U.S. National Institutes of Health representing diverse neurotechnologies and health conditions. Respondents prioritized sharing practices that maximize reuse of data to benefit patients and reduce the possibility of misuse of shared data. Most believed that both advancing research as quickly as possible and protecting their privacy are important. However, when forced to choose between these objectives, two-thirds of respondents believed that advancing research is most important. Reflecting on specific secondary use scenarios, the largest proportion of respondents were concerned about the possibility their shared brain data might be used to discriminate against them. On balance, respondents were less concerned about sharing their health information, including their brain imaging results, than sharing their online, spending, and location histories. The results affirm that data sharing with secondary researchers with the goal of helping patients by advancing research should remain a top priority and provide empirical support for legislation to prevent harms from misuse of sensitive personal data.