A challenge is to balance the goals of safeguarding patient data while sharing it among healthcare researchers who would use it to develop targeted therapies for cancer and other diseases based on an individual’s genetic and molecular profile.
The principles followed a series of expert roundtables, a bioethics literature review and an analysis of how existing “biobanks” and other large research cohorts safeguard patient data.
One principle is that participating patients be told exactly what information and specimens of theirs would be collected; how their data would be accessed, used and disseminated and how it would be kept private. (In these times of ever bigger cyber-attacks, that last item is a question of growing anxiety.)
Medscape reports that “The cohort program must allow participants to access the medical information they contribute, help them understand what it means, and explore how to share research findings with them. Participants should be able to drop out of the cohort at any time, although health information used in past or ongoing studies can’t be withdrawn.”