About 70 organizations in more than 40 nations have agreed to create a model for secure sharing of genomic and clinical data to speed medical research.
The groups have signed a non-binding letter of intent to create an organization, modeled after the World Wide Web Consortium, to develop a framework for international data sharing, and to build interoperable data platforms. As the cost of genome sequencing continues to fall and more individuals choose to make their genetic and clinical data available for research, the organizations say they recognize that they must work together.
“In practice, however, we are not organized to seize this extraordinary opportunity--nor are we on a path to do so,” the groups explain in a white paper available here. “For the most part, data are collected and studied in silos; by disease, by institution and by country. Existing regulatory procedures could not and did not anticipate developments in technology and the value of data aggregation. If data is to be shared responsibly we need to respect the privacy and autonomy of individuals. Tools and methods for analysis are non-standardized and incompatible. 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 health care.”
Signing organizations commit to respecting data sharing and privacy preferences of participants; transparency of governance and operations; best practices in technology, ethics and outreach; partnering and building trust; sharing data and information to advance health; developing an ecosystem that accelerates progress; and acting swiftly. A list of participating organizations is available here.
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