Privacy, Policy, and Profits: Survey of Patient Values and Preferences
for Research on De-Identified Biosamples
- Amelia Hood,
- Mario Macis,
- Diana Mendoza Cervantes,
- Todd Bear,
- Jeffrey Khan,
- Jennifer M. Atkinson,
- Adrian Lee,
- Marielle Gross
Abstract
This study aims to identify the values of patients to inform policies
and infrastructure for biobanking and precision medicine in the face of
trade-offs between values. We surveyed breast cancer patients about
conditions for receiving research results, partnerships between
nonprofit health systems and for-profit companies, and the distribution
of financial value generated from research. Survey questions presented
trade-offs between values such as maintaining privacy versus receiving
research results. Patients generally are willing to be re-identified to
receive information about the use of their donated tissue---especially
research results. They support public-private partnerships if they
accelerate development of new therapies and tend to favor the idea of
sharing in financial benefits generated from research on their tissue.