2 ms·
Your doctor can sell your data at any time into health data markets as long as their privacy policy allows it, and many do. See this article from 2016, for exam
by epistasis 1y ago
Your doctor can sell your data at any time into health data markets as long as their privacy policy allows it, and many do. See this article from 2016, for example:
https://www.scientificamerican.com/article/how-data-brokers-make-money-off-your-medical-records/ https://www.scientificamerican.com/article/how-data-brokers-...
Optum Health and IQVIA facilitate this.
Additionally, 23andMe sold data in the past, quite publicly, to pharma companies to help identify drug targets.
My biggest concern, more than the trading of health data and genomes, is that people are not away its happening. That builds distrust. The actual practice of sharing deidentified health data helps improve outcomes and lower costs, aid discovery, etc. etc. But if people don't know it's happening they may get scared and try to stop it, without fully understanding the risks and benefits and how the risks have been mitigated by current law.
I 23andMe delete my data a while back. I argued with people on online forums about it in two different directions: 1) that 23andMe actually would delete your data so go ahead and request it to be deleted, it's not a futile effort, and 2) it's not super important. I did it mostly because I intensely dislike the behavior of 23andMe leadership, and secondarily because it may have ended up in more nefarious hands. Which leads to 3) the most dangerous use of this data is in bad science from bad polygenic risk scores, which have been a big fad for the past few years, but which are also extremely easy to mess up. Discrimination based on bad models with poor results is just as harmful as discrimination based on good models with adequate results, and some might even say worse.