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Nearly 70 organizations in research, health care, and disease advocacy have agreed to take part in a global alliance dedicated to standardizing and sharing genomic and clinical data.

“The cost of genome sequencing has fallen one-million fold in the past several years, fueling an explosion of information about the genetic basis of human health and disease,” write the authors of a white paper announcing the alliance. In principle, this wealth of genome data could reveal the genetic basis of inherited and infectious disease, cancer and drug responses, they write. “However, we are not organized to seize this extraordinary opportunity.”

The problem is that the data is “collected and studied in silos: by disease, by institution, and by country,” write the authors. Tools and methods for analysis are not standardized and can be incompatible. Furthermore, there aren’t agreed upon regulatory procedures that respect the privacy of people who have donated their genome sequences to research projects.  All this “inhibits learning and improving health care,” they say.

To address these problems, the alliance will develop international standards and infrastructure to share and integrate data in a secure, controlled and interpretable manner that maintains patient autonomy and right to privacy. Participants in the accord include the National Institutes of Health, the Wellcome Trust Sanger Institute in the UK, and the BGI in China, as well as universities and hospitals.

The large pool of genomic sequences and medical information expected from the alliance is the sort of dataset needed to understand the genetic basis of both cancer and rare diseases reports the New York Times. The mutations underlying these conditions are just too uncommon to be studied in data collected at a single institution:

A disease might occur in one in 1,000 or one in 100,000 babies, said [David Altshuler, deputy director and chief academic officer at the Broad Institute of Harvard and MIT]. A medical center might never see a child with that disease, or might see just one. “Since everyone sees zero or one, no one ever learns,” Dr. Altshuler said.

Despite the admirable goals of the alliance, researchers may be reluctant to share hard-won genomic information, a “valuable commodity,” Nature notes:

A big question for the group is whether it can convince institutions to share their most meaningful data. “The mission is unquestionably worthy,” says cardiologist Eric Topol, director of the Scripps Translational Science Institute in La Jolla, California, which has not yet considered joining the alliance. But, he adds, “it means taking the walls down, and that’s tricky — because you’ve got each centre wanting to hold on to its own data, and the loss of control is a very difficult concept”.


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