23andMe Sold Access to Your DNA Library to Big Pharma, But You Can Opt Out July 26, 2018 https://motherboard.vice.com/en_us/...dna-library-to-big-pharma-but-you-can-opt-out
As curious as I would be to see the results of these tests for myself, I was always suspicious of the idea of paying them to harvest my info and do who knows what with it.
I wonder what the donor is opting out of. I am guessing they gave up all rights to the sample they sent in. A copy of the results is theirs since they paid for it, so maybe parts of the file gets flagged as unavailable. I bet none of the files are encrypted. Big Pharma could do good things with this data, or not. A large and diverse DNA database (5 million donors) would be a nice bellwether for research dollars. Focusing on the manufacture of pharmaceuticals that meet essential needs should benefit the public. On the other hand they could go to the dark side and use the data to do predatory pricing, like what Shkreli did (when he acquired the drug Daraprim, which is used in the treatment of aids and cancer patients, and hiked the cost of a pill from $13.50 to $750).
The tragedy of commercial involvement and the way it's happening, is that the huge public benefit of population-scale health databases coupled with genetics information - revolutionary for healthcare - will probably be delayed by a generation by greed.
Ancestry and 23andMe Agree to New Rules to Make You Feel Safer Handing Over Your DNA July 31, 2018 https://gizmodo.com/ancestry-and-23andme-agree-to-new-rules-to-make-you-fee-1828001465 “Privacy Best Practices for Consumer Genetic Testing Services” (PDF): https://fpf.org/wp-content/uploads/2018/07/Privacy-Best-Practices-for-Consumer-Genetic-Testing-Services-FINAL.pdf
OK, so I'm not going to read all that. And I'm confused. If users' DNA testing results are private, how is this possible? https://www.theatlantic.com/science...attributed-paternity/562928/?single_page=true
23andMe underscores that privacy-loving customers need to opt out of its data deal with GlaxoSmithKline September 5, 2018 https://techcrunch.com/2018/09/05/2...pt-out-of-its-data-deal-with-glaxosmithkline/
One of the issues is that most pharmaceuticals work great if you are a white male, due to limited testing outside this demographic. A large genetic data base will address this and build on natural variations across not only ethnicities, but also individuals. As is the pattern with human behaviour, a great opportunity will be lost with commercialisation at one end, and privacy paranoia at the other.
That is an excellent point. It's just that most people who used 23andMe probably didn't have that in mind. In some ways, the scarier aspect of these DNA analysis services is how they're getting used to identify infidelity. That's a much bigger deal, in terms of social impact, than illegal use by law enforcement. But on the other hand, it's cool how it's helping break up assumptions about racial identity As with everything about PII, the key issue is giving people rights to their data, and enough information to know what's going on.
23andMe Cuts Off the DNA App Ecosystem It Created September 7, 2018 https://www.wired.com/story/23andme-cuts-off-the-dna-app-ecosystem-it-created/
Congratulations 23andMe users, your genes are finally helping the company make drugs January 9, 2020 https://techcrunch.com/2020/01/09/23andme-spit-takes-finally-make-drugs/
23andMe lays off 100 workers amid shrinking demand for DNA tests It's not the hot market the company predicted January 23, 2020 https://www.engadget.com/2020/01/23/23andme-lays-off-100-workers/
Ancestry is also affected: Ancestry to lay off 6% of workforce because of a slowdown in the consumer DNA-testing market February 6, 2020 https://www.cnbc.com/2020/02/05/ancestry-layoffs-of-6percent-100-people-amid-dna-test-slowdown.html Our Path Forward
Those companies will switch over to subdermal implant tracking devices in humans. The website will be neverloseyourkeysagain or alwayshaveyouridandcreditcardswithyou dot com.
Why DNA tests are suddenly unpopular February 13, 2020 https://www.vox.com/recode/2020/2/13/21129177/consumer-dna-tests-23andme-ancestry-sales-decline
