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Privacy, Policy, and Profits: Survey of Patient Values and Preferences for Research on De-Identified Biosamples
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  • Amelia Hood,
  • Mario Macis,
  • Diana Mendoza Cervantes,
  • Todd Bear,
  • Jeffrey Khan,
  • Jennifer M. Atkinson,
  • Adrian Lee,
  • Marielle Gross
Amelia Hood
Johns Hopkins University Berman Institute of Bioethics

Corresponding Author:[email protected]

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Mario Macis
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Diana Mendoza Cervantes
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Jeffrey Khan
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Jennifer M. Atkinson
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Adrian Lee
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Marielle Gross
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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.