Today I filled my AncestryDNA test tube with the proper amount of saliva, meaning I will probably get my test results in August or maybe September.
As I do this, the DNA testing company I previously spit in a tube for (Helix) is joining Ancestry and 23andMe to back a Coalition for Genetic Data Protection, which is lobbying Congress as it considers laws regarding genetic privacy. Congress outlawed genetic discrimination in 2008 but has taken little action since.
On the one hand, Ancestry, Helix, and 23andMe say they wrote a 2018 white paper on customer privacy and they want any federal laws to reflect their best practices.
The Coalition for Genetic Data Protection's executive director Steve Haro told The Hill: "it was important for companies who are doing right by their customers on data privacy make their voice heard."
However, when the LA Times asked Haro what he would like to see for regulatory oversight, he had no real suggestions. He said that there should be a "uniform national data privacy law," setting the same rules for DNA testing companies as for companies like Facebook or Google, with no exceptions.
I had to review the "AncestryDNA Informed Consent" form to see whether I wanted my DNA to be used for research, but technically my DNA has information about my close relatives as well. Do they need any sort of legal protection?
USC medical professor and Navigenics co-founder David Agus told the LA Times, "Should you also have to get the consent of all your brothers and cousins? Why wouldn't you, seeing as it could affect them."
The uneasiness of genetic privacy goes hand-in-hand with wonder at the progress of personal genomics. As Insitome's Razib Khan says, "the future is already the present, and the horse has left the stable."
Questions? Comments? Please email me at ruedafingerhut [at] gmail.com
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