NAS study on compensation to patients for sharing identifiable data for research purposes

(a) In general Not later than 60 days after the date of enactment of this Act, the Secretary of Health and Human Services shall seek to enter into a contract with the National Academies of Sciences, Engineering, and Medicine to conduct a study examining potential risks and benefits of paying compensation to patients for sharing their identifiable data for research purposes. (b) Inclusions The study conducted pursuant to the contract under subsection (a) shall include an examination of— (1) the risks to patient privacy posed by the integration of identifiable, de-identified, and aggregated health information into datasets used for research; (2) privacy enhancing tools and methods for the protection of patient health data; (3) the feasibility of tracking patient data and consent for the integration of patient health data into datasets used for research; (4) ethical considerations for compensating patients for use of their identifiable and de-identified health data; (5) whether the existing exemptions permitting de-identified data to be used for research should consider whether a patient was given an opportunity to opt-in or opt-out of participation; and (6) risk of re-identification of de-identified data.

(a) In general Not later than 60 days after the date of enactment of this Act, the Secretary of Health and Human Services shall seek to enter into a contract with the National Academies of Sciences, Engineering, and Medicine to conduct a study examining potential risks and benefits of paying compensation to patients for sharing their identifiable data for research purposes. (b) Inclusions The study conducted pursuant to the contract under subsection (a) shall include an examination of— (1) the risks to patient privacy posed by the integration of identifiable, de-identified, and aggregated health information into datasets used for research; (2) privacy enhancing tools and methods for the protection of patient health data; (3) the feasibility of tracking patient data and consent for the integration of patient health data into datasets used for research; (4) ethical considerations for compensating patients for use of their identifiable and de-identified health data; (5) whether the existing exemptions permitting de-identified data to be used for research should consider whether a patient was given an opportunity to opt-in or opt-out of participation; and (6) risk of re-identification of de-identified data.