Ambry Genetics, a leading genetic testing company, reportedly is planning to place NON-IDENTIFIABLE genetic information from 10,000 of its customers it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases. Since it is non-identifiable information, there should be no privacy issues involved.
Pooling data from many people is considered crucial to finding the genetic elements that contribute to illnesses. AmbryShare will not contain the actual exome of each person, because that would pose a risk to patient privacy. Rather it will contain aggregated data on the genetic variants. For example, a researcher could look up how frequently a particular mutation occurs among the 10,000 people. Ones that occur frequently in these 10,000 patients, but not among healthy people, could raise the risk of developing those cancers.
Pooling data from many people is considered crucial to finding the genetic elements that contribute to illnesses.
You can read more in an article by Andrew Pollack in the New York Times at http://goo.gl/isDdk7.
My thanks to newsletter reader Jay Ingalls for telling me about this story.