An international group of leading healthcare, research, and disease advocacy organizations have come together in an effort to establish standards to foster the sharing of genomic and clinical data in an effort to unlock the links between genes and health.

Nearly 70 institutions and organizations behind the effort issued a white paper on June 3 outlining the need, goals, and issues surrounding the initiative. It comes in response to the rapidly falling cost of genome sequencing and the opportunity that the explosion of data promises to create. They say by integrating genomic and clinical data, researchers are poised to unlock the genetic basis of cancer, inherited disease, infectious disease, and drug responses.

But the group says biomedical researchers are neither organized to seize the “extraordinary opportunity” or on a course to do so. “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 healthcare.”

Organizations from North and South America, Europe, Asia, Australia, and Africa have joined together to form a non-profit global alliance to develop a common framework, enabling learning from data while protecting participant autonomy and privacy. The group will create and maintain interoperability of technical standards for managing and sharing sequence data in clinical samples, develop guidelines, and harmonize procedures for privacy and ethics. It will also seek to encourage sharing of data and methods.

The hope will be to create a “network effect.” “The more data and methods that can interoperate on common platforms,” the group says in the white paper, “the more valuable to patients, researchers, and healthcare professionals each will become.”

Each of the organizations has pledged to work together to create a not-for-profit, public-private alliance modeled after the World Wide Web Consortium to develop a common framework. They agreed to support the creation of open technology standards to support the development of interoperable information technology platforms. Ultimately, data will be stored in platforms built on interoperable standards with participants free to decide whether they want to contribute their own data.

In a letter of intent signed by the organizations, they committed to a set of core principles for the global alliance including such things as transparency, collaboration, accountability, and inclusivity. They also called for respect of the data sharing and privacy preferences of participants. An outreach beyond the existing participants is underway.

“The window of opportunity may soon close: at present, relatively little data have been collected, and incumbent systems have yet to be established,” the group says in the white paper. “In the absence of an open and interoperable solution, closed, proprietary systems will by necessity be created. This would create a fundamental barrier to gaining the benefits of data aggregation and slow the understanding, diagnosis, and treatment of disease.”