ISTOCK, ALENGOMore than 70 medical and research centers around the world have agreed to create an organized system to share vast amounts of genetic and clinical information, according to The New York Times. This “global alliance” released a white paper last week (June 3) announcing plans to thrash out standards on ethical and technical issues, such as patient privacy and data format, and to pave the way for a massive database that would be open to doctors and researchers everywhere.
“No single hospital, research group or even country alone is going to be able to collect all the data that will be needed to inform medicine and science,” David Altschuler, deputy director of the Broad Institute at Harvard and Massachusetts Institute of Technology, who was part of the organizing committee behind the document, told The Guardian. “But if we're able to look across datasets, we'll have greater progress, and we'll be able to offer people better information.”
The plummeting cost of DNA sequencing over the past few years has resulted in an avalanche of genomic data. But to fully understand the relationships between mutations and disease, researchers have to compare genetic and clinical data from hundreds of thousands of patients and healthy individuals. That’s not possible at the moment because the information tends to be siloed at separate research centers—and there is no framework in place to allow for its exchange while also protecting the privacy of the patients who provide it.
“If we remain on the current path, the likely outcome will be a hodge-podge of balkanized systems—as developed in the U.S. for electronic medical records—a system that inhibits learning and improving health care,” the organizers wrote.
The challenge is to come up with a standardized format and a system for managing consent information, and then to create an international database. “[It’s] a utopian goal, but one that is hard to argue against,” Charles Sawyers of the Memorial Sloan-Ketting Cancer Center, who was also on the organizing committee that established the alliance, told Bloomberg. “Can we pull it off? That is a question I can’t answer.”