Nearly 70 organizations have united to form an ambitious global alliance to improve how genomic and clinical data are managed and shared. The group has risen in recognition that massive amounts of electronic data from health records and genomic sequencing have failed to deliver benefits for many people around the world.
The fledgling alliance has attracted high-profile stakeholders in genomics and medicine such as the Broad Institute of MIT and Harvard, Stanford University, MD Anderson Cancer Center, Wellcome Trust, the National Institutes of Health, and BGI (Beijing Genomics Institute). The group has started down what could be a long road to create standards and technology for sharing Big Data from sequencing on a global scale.
Modeled on the group that organized the World Wide Web, the alliance has set out to establish a nonprofit group to realize its lofty goals. Beyond setting up an entity, the stakeholders must find common ground to establish a financial model to sustain the effort and agree on a technology platform and other tools to enable secure sharing of genomic and clinical data.
Rapid access to genomic data from disease samples from around the world could improve treatment for patients, even those in locations far from where the data are stored. A secure web of sorts for genomic data would have many benefits, yet it's tricky for everyone to land on the same page for how to accomplish this.
"The mission is unquestionably worthy," cardiologist Eric Topol, director of the Scripps Translational Science Institute in La Jolla, CA, which is not a member of the alliance, said in an interview with Nature. To succeed, he said, "it means taking the walls down, and that's tricky--because you've got each center wanting to hold on to its own data, and the loss of control is a very difficult concept."
Industry would also need to have a seat at the table to support the technology platform and develop software or apps for various uses of the data.
The alliance held a planning meeting in January that drew experts from Amazon Web Services ($AMZN), Google ($GOOG) and Microsoft ($MSFT). "The industry participants responded enthusiastically to the idea of a global alliance," the group's whitepaper said, "indicating that common, shared computing standards are emerging that would promote interoperability."