Many countries are exploring the building of large collections of sequences that will allow them to learn a lot about the precise genetics of their populations and then to tailor medical treatment of each individual accordingly - see personalised medicine
For some medical conditions that we know are rare eg Chronic Pulmonary Aspergillosis (CPA) there may be difficulty finding enough patients to optimise research aims in any one collection of genomic data, or any one country. It is important therefore that genomic data can be shared between collections, but so far there has been no coordinated collaboration between all research groups so inevitably there will be differences between what data is stored, how it is stored, what tools are used and so on. This makes collaboration difficult and slow, so a new group has been formed to ensure that this doesn't happen.
Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data
The repercussions of collaborative research will affect everything from customized cancer treatment to the unprecedented tracking of infectious agents, according to the alliance’s white paper. And it’s all possible because the cost of genetic sequencing has plummeted in a decade.
“I could now do your whole exome [part of the DNA that codes for proteins] for less than $1000,” says Siminovitch. “And that’s down from the billions of dollars that it would have cost to do it in the year 2000.”
Siminovitch is hopeful that genetic research will help her understand why the first drug she gives for rheumatoid arthritis, methotrexate, doesn’t work on 30% of her patients. “It takes six months to a year to realize that. If I can test for the genetic reason why they don’t respond, I can predict that ahead of time and treat the patient appropriately,” she says.
More than 70 organizations in over 40 countries have signed a nonbinding “letter of intent” to build the alliance. In the fall, according to Goodhand, representatives of these organizations, which include universities, hospitals, research centres and advocacy groups, will have the opportunity to make their participation formal by signing a memorandum of understanding.