The Business of Genomic Data by Brian Orelli

Author:Brian Orelli
Language: eng
Format: mobi, epub, pdf
Publisher: O'Reilly Media, Inc.
Published: 2016-03-09T05:00:00+00:00

Data Silos

While there are plenty of projects creating genomic data, they’re often isolated in silos that make them unavailable to other researchers.

Part of the isolation stems from a lack of a standard framework for sharing data that UC Berkeley’s AMPLab and University of Chicago and NCI’s GDC are seeking to break down.

The Global Alliance for Genomics and Health, of which Berkeley, the University of Chicago, the NCI, and 238 other institutions are members, seeks to “create a common framework of harmonized approaches to enable the responsible, voluntary, and secure sharing of genomic and clinical data.”

But the key point there is “voluntary.” Many investigators will hold back some of the patient-level data even while releasing the key points of the study that are required to get it published. “It’s the juiciest and most important information that they want to keep proprietary,” Selventa’s Kenney said, using the example of scientists publishing expression data, but holding back the information about the patients the tested sample were taken from.

The data commons format that GDC uses is designed to support so-called strength-of-evidence databases that can inform treatment and seeks to overcome the issue of separate data silos. “We’re trying to open data up through commons, in contrast to a lot of companies that are buying data, siloing it, and sending small amounts back at a proprietary price to those that contributed data,” Grossman said. “We’re trying to create a critical mass of data that’s open so that we can make discoveries in cancer and other difficult diseases.”

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