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Jun 6, 2013

Breaking Down Barriers to Sharing Genomic Data

  • A new “Global Alliance” including investigators at 73 institutions from 40 countries aims to tear down walls restricting the exchange of the swaths of genomic information today being collected in research settings and in the clinic.

    “For the most part, data are collected and studied in silos: by disease, by institution, and by country,” the group writes in a white paper published this week. “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 healthcare.”

    The international group says it met to discuss the opportunities and challenges of genomic data-sharing in January. Members say they were inspired by other collaborative initiatives like the the World Wide Web and the Human Genome Project. During its initial meeting, the group also discussed developing international standards for the IT infrastructure needed to share an integrate data interoperably and securely, “unlocking discovery while respecting patient autonomy and right to privacy.”

    Further, beyond being secure and built upon participant-centric consent, the group agreed that any technology platforms it sanctioned ought to allow for controlled access to information at multiple levels, should support major sequencing platforms, and should complement a computational architecture and API supporting apps and related services.

    The alliance also indicates it will include what it calls “operating entities,” which will set platform standards and shared principles, as well as provide services, aggregate user data, and develop tools.

    “Making genomic data and tools interoperable in a secure and trusted manner will generate a powerful network effect,” the group concludes. “The more data and methods can interoperate on common platforms, the more valuable to patients, researchers, and healthcare professionals each will become.”

    A complete list of Global Alliance partners is available here.


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