Ethical Tensions between Privacy and Access for Human-Subjects Data.

Recent policies from funders and publishers demand, justifiably, public access to data as a research output on par with Open Access publications. Indeed, data sharing is necessary even for validation and replication of findings. However, sharing data associated with human subjects is complexified by the competing need to respect the personal rights of those same subjects, especially the rights to privacy and informed consent. How can researchers share their observations without betraying the subjects' rights, since those observations necessarily contain sensitive information?

This discussion will approach the ethical questions tied to sharing human-subjects data in two broad areas of inquiry: biomedical research, and social science research.

In the biomedical setting, seemingly "anonymized" demographic details, and even precise genetic markers, may be used to determine a patient's identity if not carefully protected, all while crossing institutional and vendor boundaries. Another recently growing concern is the training and deployment of AI models without patient consent.

Meanwhile, social scientists studying social movements are confronted with quite different, but still related, quandaries: what confidentiality agreements and informed consent procedures to protect research participants should we utilize when collecting data from online forums? And how should we handle collection of data from various countries, involving different political climates and laws that may affect the privacy and security of research participants?

This discussion will focus on the inherent tensions between data access, due diligence in de-identification methods, financial motivations, and current practices. Examining issues including ethical collection, storage, sharing, and reproducibility provides an opportunity to interrogate frictions in this complex data environment.

Speakers:

• Ravi Patel, Lead Innovation Advisor in the School of Pharmacy
• Amin Rahimian, Assistant Professor of Industrial Engineering
• Hanning Wang, PhD Student in Sociology