"Living a fully ethical life involves doing the most good we can." - Peter Singer
"Common sense is not so common." - Voltaire
“There are two ways to be fooled. One is to believe what isn't true; the other is to refuse to believe what is true.” ― Søren Kierkegaard

Friday, March 24, 2017

The Privacy Delusions Of Genetic Testing

Peter Pitts
Forbes
Originally posted February 15, 2017

Here is an excerpt:

The problem starts with the Health Insurance Portability and Accountability Act (HIPAA), a 1996 federal law that allows medical companies to share and sell patient data if it has been "anonymized," or scrubbed of any obvious identifying characteristics.

The Portability Act was passed when genetic testing was just a distant dream on the horizon of personalized medicine. But today, that loophole has proven to be a cash cow. For instance, 23andMe has sold access to its database to at least 13 outside pharmaceutical firms. One buyer, Genentech, ponied up a cool $10 million for the genetic profiles of people suffering from Parkinson's. AncestryDNA, another popular personal genetics company, recently announced a lucrative data-sharing partnership with the biotech company Calico.

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