A Global Alliance for Genomic Data Sharing & Standards

Travis Korte | IEEE Spectrum | August 5, 2013

In June, a group of 70 hospitals, research institutes, and technology companies from 40 countries formed the Global Alliance (pdf), a consortium to promote open standards and best practices for organizations producing, using, or sharing genomic and clinical data.

Created in response to the flood of genomic data generated by increasingly affordable gene sequencing technologies, the Global Alliance aims to foster an environment of widespread data sharing that is unencumbered by competing, proprietary standards, the likes of which have plagued electronic health records in the United States and elsewhere...

The group is modeled after the World Wide Web Consortium (W3C), a nonprofit community that serves as the de facto standards-setting organization for Web technologies. Like the W3C, the Global Alliance plans to secure funding through philanthropic support, grants from research agencies, and member dues...

The alliance, though still in the early stages, is nevertheless an ambitious project, and one that could be widely influential if its international members can resolve these sensitive data ethics and standards regulation issues.