Genomics and electronic medical records hold a wealth of information for health researchers. But privacy concerns and ethical issues of data ownership prevent scientists from using that data. Now an open-data project aims to create a huge pool of user-contributed information on health and genomics.
A Nature News article today gave details on the newly-launched Portable Legal Consent for Common Genomics Research. The system will remove identifying details from data and require data donors to sit through a lengthly consent process.
Stanford physician and researcher Atul Butte, MD, PhD, commented on the approach:
“For folks who already have well-established cohorts of patients and controls, sharing is not the first thing on their priority list,” says Atul Butte, a physician, researcher and entrepreneur at the Stanford University School of Medicine in California.
But, Butte says, Portable Legal Consent could benefit researchers without the means to assemble large data sets. “For the little guy, or the lab that has something unique to offer but has trouble accessing the patients or the data, this is going to be an enormous movement forward,” he says.