Link: Privacy and sharing genomic data for research13 Sep 2016
Good article in Undark about privacy and genome sequencing in the era of data sharing, by Adam Tanner: “The Promise and Perils of Sharing Your DNA”.
President Obama echoed this sentiment in February. “I would like to think that if somebody does a test on me or my genes, that that’s mine,” he said.
STILL, IT’S OFTEN HARD to know if you have signed away your ownership rights because of lengthy and obtuse privacy policies. “If you look at enough terms of service and privacy policies you will see the word ‘may’ or ‘might’ being used a lot — as in we ‘may share’ — which leaves the door open,” says Jan Charbonneau, a PhD candidate at the Centre for Law and Genetics at the University of Tasmania in Australia.