Privacy,Policy,and Profits: Survey of Patient Preferences for Research on De-Identified Biosamples

Abstract

This study aims to identify patient preferences to inform ethical frameworks, policies, and technologies for advancing biobanking and precision medicine while balancing competing objectives and priorities. We surveyed 109 American breast cancer patients in 2022 about conditions for receiving research results, how their biospecimens are used, partnerships between nonprofit health systems and for-profit companies, and the distribution of financial returns from research. Survey questions explored the balance between objectives like maintaining de-identification versus receiving research results and other benefits. Patients in our sample generally prefer to be re-identified to receive information about the use of their donated tissue—especially research results. They support public-private partnerships if they speed up new therapies and favor the idea of sharing in financial returns generated from research on their tissue. These insights can inform the development of frameworks and technologies that position patients as key stakeholders in biobanking research.