Seventy medical, research and advocacy organizations active in 41 countries and including the National Institutes of Health announced Wednesday that they have agreed to create an organized way to share genetic and clinical information. Their aim is to put the vast and growing trove of data on genetic variations and health into databases -- with the consent of the study subjects -- that would be open to researchers and doctors all over the world, not just to those who created them.

Millions more people are expected to get their genes decoded in coming years, and the fear is that this avalanche of genetic and clinical data about people and how they respond to treatments will be hopelessly fragmented and impede the advance of medical science. This ambitious effort hopes to standardize the data and make them widely available.

"We are strong supporters of this global alliance," said Dr. Francis Collins, director of the National Institutes of Health. "There is lots of momentum now, and we really do want to move quickly."

David Haussler, professor of biomolecular engineering and director of the Center for Biomolecular Science and Engineering at UC Santa Cruz, is a member of the alliance's organizing committee. He said the alliance, now in the beginning stages of formation, is planning for a future in which genome sequencing will be widely used in clinical medicine, given the rapidly falling cost of sequencing.

"Understanding the role of

In just the past few years, the price of determining the sequence of genetic letters that make up human DNA has dropped a millionfold, said Dr. David Altshuler, deputy director and chief academic officer at the Broad Institute of Harvard and MIT. As a result, instead of having access to just a few human genomes -- the complete genetic material of a person, including genes and regions that control genes -- researchers can now study tens of thousands of them, along with clinical data on peoples' health and how they fared on various treatments.

In the next few years, Altshuler said, researchers expect that millions of people will have their genomes sequenced.

"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," Altshuler said. No one wants to put DNA sequences and clinical data on the Internet without the permission of patients, he said, so it also is important to allow people to decide if they want their data -- with no names or obvious identifiers attached -- to be available to researchers.

But there are no agreed-upon standards for representing genetic data or sharing them, experts say. And there are no common procedures for assuring that patients consent to sharing their information.

"Each institution has its own approach," Altshuler said.

View post:
Accord, including UCSC, aims to create global trove of genetic data

Comments are closed.