What happens when the open data movement collides with research from around the world aimed at decoding the human genome? The creation of a global database of information on genetic variation and health, that could give thousands of researchers and doctors access to information that could both change the way they carry out projects and even save patients’ lives.
The New York Times reports that research institutions from 41 countries have agreed to come up with a way to share their learning on genetics in an effort to unite disparate findings from labs around the globe:
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. […]
In just the past few years, the price of determining the sequence of genetic letters that make up human DNA has dropped a million fold, Dr. David Altshuler, deputy director and chief academic officer at the Broad Institute of Harvard and M.I.T., explained. 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.
The new system, which would come up with a way to share data from consenting patients, could help inform researchers how to proceed when they find a rare, cancer-causing mutation, for example, in the genes of a patient, by cross-referencing that mutation with ways other researchers have dealt with it.
The article continues:
Cancers are so genetically complex that, most of the time, a mutation seen in a cancer patient will be uncommon. To figure out its significance, data from hundreds of thousands of patients — the world’s collected data — on that mutation are needed. “You need large data sets,” Dr. [Francis] Collins, [director of the National Institutes of Health] said. “You need very large numbers of patients.
Like, in the millions. And we’ll get there soon. the challenge will be figuring out how to sift through and share those mounds of data. Sounds like geneticists should poach developers from Facebook. It’d be a far more important use of their talents to create a database that would let scientists comb for information about individuals’ genes that letting marketers figure out how to sell their product specifically to tweens from Tallahassee who like Bieber.