Although the first human genome was sequenced in 2003 and hundreds of thousands have been sequenced since, researchers rarely have easy access to this information. The Global Alliance for Genomics and Health is trying to change that.
By providing the genomic information to other researchers, the Toronto, Canada-based nonprofit seeks treatment for orphan diseases — conditions so rare that there are no case studies or names for them.
Currently, genomic information is mailed or hand-carried on hard drives, making it difficult to execute large-scale comparisons for study, according to the MIT Technology Review. But placing all the genomic information available on a website may cause privacy concerns, so some of the proponents have suggested reverse-engineering it: Instead of making the information accessible online, put the queries online for the researchers to answer with the information available. Researchers send queries to hospitals, which can choose how much information to share when answering.
A pilot system, called Beacon, launched in summer 2014 and can perform basic searches through 20 databases of human genomic information, according to the report.
"There's going to be an enormous change in how science is done, and it's only because the signal-to-noise ratio necessitates it," Arthur Toga, a researcher leading a consortium studying Alzheimer's at the University of Southern California in Los Angeles, told the MIT Technology Review. "You can't get your result with just 10,000 patients — you are going to need more. Scientists will share now because they have to."