White House issues privacy guidelines for precision medicine

The White House released an update Wednesday on the progress of its Precision Medicine Initiative (PMI) that included proposed privacy guidelines and a series of data-sharing partnerships.

In draft guidelines, the White House emphasized transparency in policies governing use of data generated from the PMI's research cohort and mechanisms for keeping the data secure. The document recommended informing patients of how their data will generally be used and shared, in which types of studies their data may be used, and what security measures are in place to protect their data. Patients would be allowed to withdraw consent for future data sharing at any time, and all users of PMI data would be required to make their study results publicly available. ...