I should warn you: I’ve submitted DNA samples to both the National Genographic project and to 23andMe. As we’ve just learned, that means the police can use that data to connect DNA samples collected at crime scenes to my relatives, which means they have a lead to you even if you haven’t given a DNA sample. Honestly, if I do have any criminals in the family, I would kind of hope they could stop you with that information.
However, I don’t remember giving the police permission to use my genetic information — it was probably buried in tiny print somewhere in an agreement I signed. That’s a bit troubling. OK, a lot troubling. Now I’m wondering who else has access. So, if there’s a disease-associated trait somewhere in my background, are the insurance companies going to knock on the door of my second cousins somewhere and announce that they now have grounds to suspect that there is a medical problem lurking in their genome, and they’d better cough up some increased rates?
It’s a two edged sword. Yes there are privacy concerns, but will that be balanced by solving crimes as well as aiding research into genetic disease? Then again, in tRumpf’s America…
Several years ago (like, 10-20 years ago) there was a flock of laws about insurance and genetic testing meant to cover exactly the worry you have there.
Just my paranoia acting up again, but I suspect that has already happened. They’ll walk it out in a few months as a ” Gee, oh by the way…”.
Canada just passed a bill last year to cover this, and it was a hell of a fight. It protects, at least, against insurance availability/rate discrimination based on one’s own genetic testing (which is a step better than the US law as I understand it – the US law protects against employment discrimination, but not insurance discrimination).
The ink is still drying so I don’t think it’s really been tested in any way yet, but it might be possible to skirt the law by using results from family members. That loophole should really be closed.
From the article quoted, it looks like they used information that was shared publicly (“and comparing it to genetic profiles available online through various websites”). If you’re sharing your information publicly, then they’ll be able to access it!
I would never trust cops to respect privacy. I think you’d be more than a bit foolish if you did. I barely trust my hospital to keep my stuff private, especially when it comes to insurance companies.
Now I’m wondering who else has access.
Presumably the FBI, CIA, Interpol, MI5, FSB (RF), SVR (RF), the Syria Mukhabarat, Mossad and your neighbourhood pizza parlour?
We are not sure about the People’s Republic of China. We’ll get back to you on that.
On a slightly more serious vein, was there not a rather good science fiction book written about genetic testing and the insurance industry a few year ago that outlined a lot of the issues?
Apparently, they used GEDmatch, a tiny service where people voluntarily post their genetic profiles for public viewing. The nominal purpose of the site is for genealogical research, but their privacy policy does (at least recently) warn that the public might use the data for other purposes. 23andMe’s policy is, apparently, to resist law enforcement uses of their data. Ars Technica had a good article about it today:
https://arstechnica.com/tech-policy/2018/04/gedmatch-a-tiny-dna-analysis-firm-was-key-for-golden-state-killer-case/
I’ve found the proliferation of these tests, and the number of people eagerly using them, deeply distressing because there was never any doubt in my mind that they would be used this way. The US is a police state, and any decision a person makes has to take that into consideration.
It won’t stop with catching serial rapists and murderers, either. Precedent has been set, and the people in charge are going to push it just as far they are allowed to. Smoke a joint in college, 20 years ago? Well, I hope you didn’t leave any part of it unburned, because if you did our attorney general will be coming for you eventually.
However paranoid this news makes you feel, know that it isn’t nearly paranoid enough.
I’m guessing that the company didn’t release anything, at least in the way it keeps being portrayed in the news. The company probably didn’t have a clue what was happening. I used 23andMe, so I can guess at a probable strategy:
1) Police have DNA from a crime scene. They submit it to a DNA-testing genealogy company as if they are submitting their own personal DNA.
2) Said company sends results, but also send a list of “possible family members”. 23andMe not only sends you a list of current “members” who may be related to you, but will also notify you of any future people who send their DNA in for testing. They say the degree of relationship…something like “25% match…possible cousin”. If I remember correctly, they don’t let know know exactly who the person is, but you can contact them through their app/webpage.
3) Police reach out to the possible matches and obtain their identities. Then they piece together their actual relatives and see who was in the areas at the times of the crimes.
In no time did the company actually provide police with the identity of anyone.
Just a guess…
I agree that it’s problematic, but it’s also a middle class white thing. I’ve been thrown in stir a couple of times, and the first thing they do is take your prints and a cheek swab. Since close to 40 percent of black men in America have their DNA on file, this is an everyday occurrence for the poor and for POC. I’m not taking a cheap shot at Professor Myers here, but police sharing your DNA is as American as lynching and purging voter rolls.
It wasn’t Ancestry.com, or 23andMe.
jrkrideau, are you thinking of Robert J. Sawyer’s book Frameshift? It featured a Canadian geneticist working in the United States who had a family history of Huntington’s and suddenly he had to figure out what to do about medical insurance?
Gattaca says hello. Better start brushing off those extraneous hairs and whatnot. Sorry to see your beard go, though.
@ 13 chorpler
Yes, Robert J. Sawyer’s book Frameshift, that’s the one. I thought at the time that he was pointing out some serious concerns.
I completely agree with PZ’s concerns. I just want to add that the privacy issue is huge, growing, and not restricted to DNA. Some people consider privacy completely old hat — for instance, George Church (and some others) in genomics, Mark Zuckerberg (and many others) in social media and high tech. Both those two at least recognize that most people disagree with them, at least in part, and make some effort to allow customers to make some effort to keep some things private. Others are less accommodating, and that’s the trend. I don’t have a solution, I’m in pure Cassandra mode here.
Step toward Gattaca.
(I only realized this last year that the name Gattaca was derived from the 4 bases of DNA)
petesh:
Apollo put his curse—that Cassandra’s accurate prophecies would be disbelieved by all who heard them—upon Cassandra by spitting into her mouth. Pity they didn’t have saliva tests for DNA at the time!
@ #10 seaweed
According to the NYT that’s exactly what happened. They took the killer’s DNA from a crime scene and created a fake profile, posing as a user researching family history, and submitted it to GEDmatch. The company responded with matches of possible distant relatives. From there, routine police work led them to the killer.
Would you support a nationwide DNA database?
@ Drew, #20
No. Hell no. Bad enough that the intel agencies are free to trawl their sticky little fingers through my internet activity.
(Hope whoever follows me around likes sexy dragons, ‘cause they’re gonna see a lot of ‘em.)
@20 I’d support a national gun database with ballistic signatures, funded with gun registration fees. But a mandatory DNA database – not a chance. I don’t even have a courtesy card for the local supermarket – even my grocery shopping habits are nobody’s business.