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It's crazy that your own genome is not protected health information. Your doctor can't just sell your info to another doctor when they close their practice.
by hiatus 1y ago
It's crazy that your own genome is not protected health information. Your doctor can't just sell your info to another doctor when they close their practice.
- RandallBrown 1y agoThey can't sell the info, but they can sell the practice, which is very similar.
- Loughla 1y agoBut I'm getting a doctor in that situation. My doctor is leaving, and it's saving me steps, really, in finding a new doctor. What do I get when another company buys my genetic information?
- OJFord 1y agoWhat were you going to get if they continued operating (practicing) instead of selling?
- Loughla 1y agoMy original doctor? I don't understand the question you asked.
- OJFord 1y agoRight, in that analogy, but in this case there was nothing further you would get as far as I'm aware, it was a one and done transaction? So the analogy doesn't really hold, because unlike the doctor's practice without the sale you had no expectation of any further service or benefit from it anyway.
- kjkjadksj 1y agoIt isn’t your genome in question and also people consented towards this.
- butlike 1y agoConsented to a relationship between 23andMe and the person, not 23andMe and another arbitrary business
- throwaway173738 1y agoThey do put the records in the care of another practice at times. My dentist did that when he retired.
- hiatus 1y agoI wouldn't think a custodian of records is allowed to do whatever they want with them, but I don't know what they are and are not allowed to do.
- epistasis 1y agoYour 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.
- deleted 1y ago[deleted]