Showing posts with label HIPPA. Show all posts
Showing posts with label HIPPA. Show all posts

Tuesday, September 11, 2018

You Discovered Your Genetic History. Is It Worth the Privacy Risk?; Fortune, September 10, 2018

Monica Rodriguez, Fortune; You Discovered Your Genetic History. Is It Worth the Privacy Risk?

"Direct-to-consumer genetic testing companies like 23andMe must win FDA approval to send individuals medical risk findings, while companies that involve physicians in the process do not. But unlike healthcare providers, direct-to-consumer genetic testing companies are not bound by HIPPA, the law that protects the privacy of personal medical information, and there are few laws in place to regulate the privacy of genetic information obtained by these companies.

“One of the big distinctions between medical research and data in Silicon Valley is the ethical framework that requires informed consent,” said Charles Seife, a professor of journalism at New York University who writes extensively on the genetic testing industry. “It is a difference of making sure that [privacy] rights are being preserved.”"