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.”"
Ethically-tangled aspects of 21st century societies and cultures. In the vein of Charles Darwin’s 1859 “entangled bank” metaphor—a complex and evolving digital ecosystem of difference and dependence, where humans, technologies, ethics, law, policy, data, and information converge and diverge. Kip Currier, PhD, JD
Showing posts with label de-identification. Show all posts
Showing posts with label de-identification. Show all posts
Tuesday, September 11, 2018
You Discovered Your Genetic History. Is It Worth the Privacy Risk?; Fortune, September 10, 2018
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