Global alliance formed to create framework for genomic data sharing

More than 70 major research and healthcare organizations from 41 countries have signed a letter of intent to create a framework for sharing genomic data worldwide, posted at the Broad Institute's website. Rather than having information in silos at each institution, the aim is to create massive databases to aggregate data to help provide new treatments and therapies for genetic diseases.

While whole genome sequencing can pinpoint a mutation in DNA that might be causing a disease, some institutions might see only that single case and have no frame of reference for it.

"What we are realizing is that it's insufficient for each hospital to do its own sequencing and have its own data set, of maybe thousands of patients. What we really need to do is pool our data across hospitals, so that we have hundreds of thousands and maybe even millions of patients," Brigham and Women's Hospital president Dr. Betsy Nabel told The Boston Globe.

She said the ability to compare the genomes of millions of people could alter medicine as profoundly as antibiotics, vaccines, or organ transplantation.

There's much to be worked out--so far each organizations deals with the many technical, logistical, and ethical issues in its own way. A major concern is putting patients in control of their data and the decisions about who much of it they're willing to share. The organizations are starting out with a white paper on their plans.

An initial meeting in January included representatives of organizations ranging from The National Institutes of Health to Disney and Pixar.

"The question is whether and how we make it possible to learn from these data as they grow, in a manner that respects the autonomy and privacy choices of each participant," Dr. David Altshuler, deputy director of the Broad Institute, a genomics research center in Cambridge, Mass., told The New York Times.

In January, the European Union announced plans to invest 38 million Euros (more than $50 million) in a global collaboration focused on new diagnostic tools and treatments for people with rare diseases.

The U.K. also plans to map the DNA of up to 100,000 citizens in an effort to better understand and treat cancer and other rare diseases.

Patient privacy, however, remains a huge issue in these massive database projects as stories proliferate about how researchers can identify "anonymous" patients from just a few pieces of information.

To learn more:
- find the participating organizations
- here's the white paper
- read the Globe article
- check out the Times story

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