23andMe Sells Gene-Testing Business to DNA Drug Maker Regeneron

Which somewhat undermines all the doomsday scenarios that people have been talking about. Going back to 23andMe going bankrupt in the first place, this data is clearly not worth nearly as much as it would be if any potential buyers thought there was an actual legal path to abusing this data in the way many are predicting. That doesn't mean that won't change in the future and part of the problem here is that there is no putting the toothpaste back in the tube, but buyers don't think this will change anytime soon, which should be an indication that it probably won't.

They will keep selling and re-selling copies of this dataset as long as there are interested buyers.

There is no "better outcome".

People who got bamboozled into paying for this junk service shouldn’t have their DNA data treated as some commodity that can be traded like a stock.

The sale of this data should be treated as PII and "transfers of ownership" should not be implied. The default for every user should be to delete the data upon sale of company and provide a way for users to opt in to the transfer.

Users should be incentivized and trust (if any at this point) needs to be rebuilt with this new company, not implied.

[delayed]

With this corporatist court? You'd be lucky if they don't reverse the ban on using the data for health insurance and all privacy laws at the same time

You're making too much sense

I Want To Believe.

It is - just followed these steps this week.

As noted therein, you need to request a download well before you actually delete your account, since the former requires to batch work to complete and the latter will cancel any in-progress requests.

$17 per person. quite a number.

$256 is steal for what they are getting.

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-...

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.

They can't sell the info, but they can sell the practice, which is very similar.

They do put the records in the care of another practice at times. My dentist did that when he retired.

It isn’t your genome in question and also people consented towards this.

On the face of it, this seems like a win-win when you think about Regeneron using this data to make better medicines based on the data.

And it's now worth more to aggressive buyers.

This was the same sentiment about 23andme many years ago.

If regeneron cared about user privacy, then they would work to make sure consent to use of every piece of data is obtained.

It should be the default to delete any data that has not received a consent upon transfer and users must opt in for regeneron to use it for research or otherwise.

Telling the slave how lucky he is to have been bought by a good slave owner.

Buying and selling humans has never been a good thing. Trading their DNA in the marketplace without consent is just the new evil our generation is too blind to see.

not really. i work in the field. any commercial offering is likely subject to this. every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement.

it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.

What do you mean by "illegal"?

Need to offer $17 for it

So I have to assume you didn't read the fine print when you clicked "Accept" or whatever . . .