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Patients Willing to Share Data for Research—but Not Everything

Aug. 22, 2019, 7:26 PM

Most patients would donate their health data and biospecimens for biomedical research, but few are willing to share everything, and institutions’ current consent practices don’t accommodate this, a study found.

The findings indicate more research institutions should shift how they ask patients for permission to use their data from an all-or-nothing approach to one that relies on a tiered consent model that allows for partial use of electronic health information.

Institutions rarely use a tiered consent model, often due to criticisms that it’s too cumbersome and not practical to pick and choose which information a patient can share in a ...