"I don't think the average consumer has wrapped their head around the range of issues they should think about."
23andMe, Ancestry, Helix, MyHeritage, sign on to a privacy best practices document . (1/ thread) washingtonpost.com/technology/201…
23andMe, Ancestry, Helix, MyHeritage, sign on to a privacy best practices document . (1/ thread) washingtonpost.com/technology/201…
2/ The DNA test privacy guidelines were put out by the Future of Privacy Forum. Here's the full document. fpf.org/wp-content/upl…
3/ OK, so the privacy and security standards of commercial direct-to-consumer DNA databases matter why? Because they are huge. More than 12 million as of Feb 2018 and, by now, six months later, probably around 18 million.
technologyreview.com/s/610233/2017-…
technologyreview.com/s/610233/2017-…
4/ Check out this curve. 
Neat. The privacy risks identified include PREDICTIONS about the FUTURE. Including what DNA can say about people not even born. i.e. your DNA would identify your children and, in a probabilistic way, say something about their predispositions.
5/ You can drive a bus through this exception. The privacy standards don't apply to "de-identified" data.
6/ Wow this is kind of interesting. The document foresees marketing based on your genotype--or marketing based on your RELATIVES genotypes.
7/ Pretty sure 23andMe is in violation of this one: "consumer facing services should not be marketed to....anyone under the age of 18"
Yet here's a 23andMe ad featuring a cartoon character from a kids' movie. 23andMe has many minors in their database.
Yet here's a 23andMe ad featuring a cartoon character from a kids' movie. 23andMe has many minors in their database.
8/Report says big DTC gene companies would hand over data to police for "valid" reasons, i.e. a warrant. Police could use databases to find owner of DNA left at a crime scene. Expect this to happen soon, methinks.
END thread is here:
PS- Future issue: should consumers have a say *in what* kind of research their data is used for? 23andMe is huge contributor to studies of genetics of intelligence and cognitive ability, which some people think are divisive and generally bad. see:
