Concerns and Priorities of Neurotechnology Research Participants Related to Data Sharing
Thursday, September 19, 2024
3:00 PM – 4:00 PM CT
Location: Midway 11 (First Floor)
Abstract: In 2019, NIH’s BRAIN Initiative adopted a detailed Data Sharing Policy to promote sharing of data generated in neurotechnology studies (“brain data”). While sharing these data is critical to accelerating research, bioethicists have raised concerns about privacy risks given the potential for these data to reveal individual mental and emotional states and conditions as well as thoughts and feelings. However, few studies have been conducted to understand research participants’ perspectives on sharing their brain data generated in neurotechnology studies, including the relative importance of various sharing practices intended to promote privacy and other objectives and participants’ privacy concerns related to sharing brain data compared to other personal information. To help fill this gap, we conducted a survey with 53 participants (79% response rate) in human neurotechnology studies to understand their brain data sharing perspectives, concerns, and preferences. Our survey respondents believed that protecting data against bad actors and reusing data to benefit those with the same health conditions were the most important sharing practices. Further, most respondents (70%) were concerned specifically about third-party use of their brain data to discriminate against research participants. However, when forced to choose, most respondents believed that advancing research was more important than protecting participant privacy. Finally, respondents were less concerned about sharing their brain and other health data than data related to their online activities, including their emails, text messages, and search history. Our findings are useful inputs in the development and implementation of data sharing and other policies related to human neurotechnology studies.
Learning Objectives:
After participating in this conference, attendees should be able to:
Describe the perspectives of participants in human neuroscience studies related to data sharing, including privacy concerns and trade-offs between protecting privacy and advancing research.
Discuss the implications of these findings for development and implementation of data-sharing policies for human neuroscience research and the larger policy environment.
Whitney Bash Brooks, MPH – Center for Medical Ethics and Health Policy – Baylor College of Medicine; Norah Crossnohere, PhD – Department of Medicine – Ohio State University; Christi Guerrini, JD, MPH – Assistant Professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine; Kathryn Maxson Jones, PhD – Assistant Professor, Department of History, Purdue University; Amy McGuire, JD, PhD – Professor, Center for Medical Ethics and Health Policy, Baylor College of Medicine; Jill Robinson, MA – Center for Medical Ethics and Health Policy – Baylor College of Medicine
