DNA Testing Companies Agree to New Privacy Guidelines

[Jtalk4456]

https://gizmodo.com/ancestry-and-23andme-agree-to-new-rules-to-make-you-fee-1828001465

 

TL DR: Top DNA testing companies have agreed to follow a voluntary set of guidelines for privacy when dealing with how users DNA data is handled/shared/sold

 

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Companies 23andMe, Ancestry, Habit, Helix, and MyHeritage released on Tuesday a guide, “Privacy Best Practices for Consumer Genetic Testing Services,” which the companies plan to follow moving forward. Under the new voluntary protocols, these companies will obtain separate consent from users before sharing “individual-level information,” including personal information and genetic data, with other businesses.

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The Future of Privacy Forum worked with the businesses to create the new rules. 

This is something I hadn't even thought of in terms of privacy. I think a lot of people, myself included, tend to gloss over privacy when we're not working with a large tech company like facebook or google or amazon. Non tech companies, we don't even think about it sometimes. I'm glad they're being proactive about this

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In April, California officials revealed investigators had used information from genealogy websites to figured out the possible identity of the Golden State Killer after he had eluded authorities for 44 years. But those investigators did not acquire a court order to retrieve the data since they used GEDmatch, which uses publicly shared raw genetic data.

Well maybe not entirely proactive, but they messed up and they took action as a group and I'm happy they are being better. Also if catching a guy who committed "at least 12 murders, more than 50 rapes, and over 100 burglaries in California from 1974 to 1986" according to google, is the thing this info was used for, I'm perfectly happy with that...

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The new guide also says that the companies will provide an annual report that shows how many requests they received from police, similar to those issued by companies like Facebook and Google.

Good to hear

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Last week, 23andMe announced it is partnering with the pharmaceutical behemoth GlaxoSmithKline, giving the company access to 23andMe users’ genetic data, which 23andMe says will be stripped of identifying information and only used when consumers have previously given consent. GlaxoSmithKline will use the data to aid the development of new drugs.

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Kate Black told the Washington Post that the company estimates about 80 percent of users consent to having their information used in research.

This is a GREAT use of data collected by a company. I wish more companies used their resources to help the world

 

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Ancestry and 23andMe already provide transparency reports, including law enforcement request numbers. 23andMe said that it has not shared information with police for any of the five requests sent to the company this year. Ancestry’s report shows that police sent the company “34 valid law enforcement requests” in 2017, and Ancestry provided information in all but three of those cases.

Just some perspective to end it

[imreloadin]

I for one can't wait until my health insurance company charges me more for a genetic disease I'm predisposed to that I don't currently have! Because we all know this is where everything is ultimately heading...

[Velcade]

Hahahahahahahahha.... too late.  Your DNA has been sold. 

[Jtalk4456]

31 minutes ago, imreloadin said:

I for one can't wait until my health insurance company charges me more for a genetic disease I'm predisposed to that I don't currently have! Because we all know this is where everything is ultimately heading...

I would argue that the opposite is also possible at the same time. If you do a test showing there's little to no risk of anything, you'll get a discount. Plus it doesn't matter as long as DNA tests aren't required to get insurance, which I don't see happening soon

[Brooksie359]

41 minutes ago, Jtalk4456 said:

I would argue that the opposite is also possible at the same time. If you do a test showing there's little to no risk of anything, you'll get a discount. Plus it doesn't matter as long as DNA tests aren't required to get insurance, which I don't see happening soon

Well that great if you have genes without many hereditary diseases but not all are that lucky. I know I would be one of the people with higher rates if that ever happened. Good thing I don't freely give anyone my DNA. 

[Taf the Ghost]

Biometrics were the "next, big thing!", and we're right back to "this really was a terrible idea". Though something like this coming out after the Golden State Killer was found via this method wasn't too surprising. Sure, they found a killer (which no one really minds), but they used a database in a way that was never intended. While this instance was positive, the future ones won't be. Enjoy being in all of the databases with data you can never change. Fun!

[S w a t s o n]

My advice, dont give your fucking genetic data to any private corporation. Why do you even need to? So you can point to a chart that shows you're totally like 5% African or something? If it's for medical reasons, talk to your doctor about having it done at a real lab.

 

I should point out that I would actually be a prime candidate for this gimmicky shit. I'm Heinz 57 in terms of genetics/ethnicity and I don't really know my family tree past my grandparents. Don't really care but if I did I still wouldn't send them my spit.

[Fasterthannothing]

I knew from when they first started doing this it was a bad idea and basically the biggest data treasure trove ever. Time for tin foil hat time honestly I wouldn't be surprised if the government had all this information and could use it in conjunction with all the biometrics being installed and people's phones and stuff to know exactly who you are, where you are, and everything about you. Handing your DNA over to these companies is a stupid idea anyway like come on people think of the data that hackers and governments (especially ones like China and their crazy face recognition and biometrics) could have access to.

[Guest]

I don't have any problem handing over my DNA for research when I hand it over to tissues every day for free. 

[Taf the Ghost]

9 hours ago, Shorty88jr said:

I knew from when they first started doing this it was a bad idea and basically the biggest data treasure trove ever. Time for tin foil hat time honestly I wouldn't be surprised if the government had all this information and could use it in conjunction with all the biometrics being installed and people's phones and stuff to know exactly who you are, where you are, and everything about you. Handing your DNA over to these companies is a stupid idea anyway like come on people think of the data that hackers and governments (especially ones like China and their crazy face recognition and biometrics) could have access to.

It's a bit of time before they can pull up the information in real time (it's the Database size that's the issue), but by 2030 they'll be more than able to active all of the tracking in real-time. Only upswing is most governments are highly incompetent at managing information systems, so we get a few extra years before it's too far. Best defense is still just to stay below the radar.

[samcool55]

I'll never forget the rule "data itself is neutral, it's how it's used that will decide if it's good or bad".