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.”" 
The Paperback version of my Bloomsbury book "Ethics, Information, and Technology" will be published on Nov. 13, 2025; the Ebook on Dec. 11; and the Hardback and Cloth versions on Jan. 8, 2026. Preorders are available via Amazon and this Bloomsbury webpage: https://www.bloomsbury.com/us/ethics-information-and-technology-9781440856662/
Showing posts with label third party access. Show all posts
Showing posts with label third party access. 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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