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Ask HN: What do DNA companies do with their data troves?

6 points by beefchops ↗ HN
So a lot of my friends and family have been submitting their DNA to these companies for ancestry results. Unfortunately, they got nothing interesting back about their history, unlike what they saw on the commercials. Some of them are egging me on to try it out. As an old timer, I'm not used to giving out my information willy-nilly like that.

Companies portray it as peeking into the distant past of my family history, but if I submit my DNA to these companies, what exactly do they get in terms of sequencing? Do they sequence all my genes, and so they will be able to gleam into what pre-disposed health problems I have, or what at-risk cancers I fall into? Can they see what the state of my body is in right now?

On the market side, do they reserve the right to sell my data to health insurance companies so that my rates could go higher, or could I be denied coverage for some pre-existing ailment? Does this bypass HIPAA compliance since it is voluntarily given to them?

Presumably insurance companies will buy and piece together data submitted by my relatives to make educated guesses at me, and then base my premiums on the DNA submissions of my relatives' health?

Not that I'm planning on doing it, but I was curious to know if anyone knows exactly how this works, or what they do with the troves of data they own?

4 comments

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ocdtrekkie
Big pharma is super excited about buying access to this data: https://mediacenter.23andme.com/press-releases/gsk-and-23and... and https://venturebeat.com/2015/01/14/23andme-has-signed-12-oth...

I wouldn't be super surprised to see insurance companies get in on the game, though there's already laws against discrimination on the basis of genetic information, so I'd be interested to see if that would face any regulatory blowback: https://www.hhs.gov/hipaa/for-professionals/special-topics/g...

aurizon
In 10 years or so, they could create a racial assassin, spreads like flu, renders target race infertile, or girls/boys only fathered. Later on they could customize it so Joe Smith could be killed as the virus spread finally encounters his personal sequence. This is within reach, but not in our grasp at this time, unless it is blocked. Hard to gain favor for a blocking a virus that will give republicans/decocrats hemorrhoids, as both sidesare probably secretly at work on it now ;)
yellow_lead
Citation needed, but I'm fairly certain I've read that companies like Ancestry retain the right to use your DNA/data for a variety of commercial reasons. Also, if I were you I would be concerned about it being used by the government [1]. Sure, looking up a serial killers DNA is something most can agree with but imagine this being used in an automated way for way lesser crimes.

[1] https://www.npr.org/sections/health-shots/2018/10/11/6562687...

LinuxBender
For at least 20 years, they have sold it to insurance companies. That is why I fought the military collecting DNA. I escalated all the way to Al Gore. That bought me enough time to get my honorable discharge and walk away from those lunatics. Before someone mentions it, 23andMe has not been around that long, but companies are just flavors. They come and go but the same people and labs have been around for a long time.

My unit commander said, "Are you afraid we are going to clone you?". I replied, "No sir, you should be afraid you are going to clone me." We both had a chuckle because we both knew I was right. I then explained how insurance companies were retroactively canceling insurance policies based on "genetic predisposition to {xyz}" for people laid up in hospitals with large medical bills and that it was my patriotic duty to fight this, even if it meant a court martial.

I should add, all of my FOIA replies were about as generic as a car commercial. It amounted to: The Chief Medical Officer of the DoD can do anything with this data and retain it as long as they wish.