limitations of patient privacy - genomic studies

besa

http://www.the-scientist.com/?articles.view/articleNo/44369/title/Toward-Protecting-Participants--Privacy/

"Genomic data shared via the Beacon Project are vulnerable to privacy breaches, scientists show.

Anonymous patients whose DNA data is shared via a network of web servers—or beacons—set up by the Global Alliance for Genomics and Health are at risk of being reidentified, according to a report published today (October 29) in The American Journal of Human Genetics. In it, researchers from Stanford University and their colleagues present recommendations for how security could be improved, but some scientists argue that any promise of DNA data privacy is probably a fallacy....

The paper shows that . . . if you have access to someone's DNA, you can now go and check in different beacons to see whether [that person] participated," said computer scientist and computational biologist Yaniv Erlich of Columbia University in New York City who was not involved in the work..........."

"......"The take home message from a paper like this. . . is that it is important to notify research participants about the limitations of [data] privacy," he added....."

Original reference:

S.S. Shringarpure and C.D. Bustamante, "Privacy leaks from genomic data-sharing beacons,"The American Journal of Human Genetics, 97: 1-15, 2015.