23andMe

Chuck Schumer Freaks Out Over Direct-to-Consumer Genetic Testing Privacy

Worried about your genetic privacy? Then don't take the tests.

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GeneticTestingSerguntDreamstime
Sergunt/Dreamstime

Lots of folks will give themselves and their relatives direct-to-consumer genetic testing kits as holiday gifts this year. Millions of customers have already used such kits to learn about their genetic ancestry. For example, 23andMe reports that 99.6 percent of my genes derive from Europe, with 43.2 percent being British and Irish. Also, I bear more Neanderthal variants than 85 percent of 23andMe customers, although Neanderthal ancestry accounts for less than 4 percent of my overall DNA.

Sen. Chuck Schumer (D–N.Y.) thinks the testing companies don't provide enough privacy protection for their customers' genetic data. "Many don't realize that their sensitive information may end up in the hands of many other third party companies," he said at a press conference Sunday. Schumer wants the Federal Trade Commission to investigate the situation, with an eye toward establishing rules that forbid testing companies from sharing your genetic information with other companies or researchers.

The senator did not cite any evidence that genetic testing customers are actually much worried about their privacy. I reached out to various testing companies asking if they had received many (or any) complaints from customers about their privacy policies. Only 23andMe got back to me: Spokesperson Andy Kill claimed there is "nothing substantial to report as far as customer concerns on this front."

That sounds about right to me.

First, my bona fides. Seven years ago, I wrote an article arguing that worries about genetic privacy are way overblown. I have gone so far as to post publically my 23andMe genotype scanning results. My results are constantly updated as new information about the genetic variants tested for become available. My point is that genetic information is not special, toxic, or occult.

In any case, the direct-to-consumer genetic testing companies all post their privacy policies so that consumers can review them. All of them promise not to disclose your information without your permission. If the companies change their privacy policies, they notify users of the changes and give them an opportunity to withdraw from their services.

For example, 23andMe states, "We will not sell, lease, or rent your individual-level information (i.e., information about a single individual's genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent." MyHeritage similarly declares: "In no case is the personal information provided by our users sold, licensed or otherwise shared by us with advertisers, sponsors, partners or other third parties. We will never sell or license DNA samples, DNA Results, DNA Reports or any other DNA information, to any third parties without your explicit informed consent, and we will never sell or license such information to insurance companies under any circumstances." Ancestry.com won't disclose personal information to third parties without your knowledge and consent, except "as reasonably necessary to comply with a law, regulation, valid legal process (e.g. subpoenas or warrants served on us) or governmental or regulatory request."

Of course, no company can promise absolutely that it can prevent disclosure through hacking.

For what it's worth, I have basically consented to let 23andMe do whatever it wants with my genetic test results. I think that doing so advances biomedical research that will end up helping lots of people and aids in figuring out what makes us humans tick. For example, my 23andMe genetic data was used in a study published in Nature Communications that found genetic associations with the susceptibility to some common infectious diseases and another in Molecular Psychiatry that identified genetic correlations associated with empathy. You're welcome.

At any rate, if any people do have concerns about their genetic privacy, they have a simple way to avoid the issue: Don't take the tests.

Disclosoure: I am a longtime happy customer of 23andMe.

NEXT: The U.S. Government Wants to Seize 'Pharma Bro' Martin Shkreli's Wu-Tang Clan Album

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  1. I was really let down by 23AndMe. It turns out I am basically exactly what I thought I was. Nothing cool at all. I was hoping for some jew, or some sub-saharan African. Or India or something. Nothing. All boring ass Ubermensch genetics. German, German, and more Polish. Boring.

    1. Well that’s what happens when Dennis Green conducts your DNA test.

    2. No Neanderthal? I refuse to believe that, BUCS.

      1. “no neanderthal” and “no sub-Saharan African” are mutually exclusive

        1. I don’t think so. Not all Europeans, and certainly not all Asians, have Neanderthal DNA.

          1. I think he’s saying everyone came out of Africa, so if you don’t have that DNA you must be Neanderthal.

    3. That your ancestors were not very adventurous is not the testing company’s fault.

  2. It’d be news if Chuck Schumer wasn’t freaking out about something.

    Loving the Bailey disclaimers.

    1. “Chuck Schumer freaks out” could be used in the headline of any story about him.

      1. And Chuck would be fine with that, because you’re talking about him. No wonder he can relate to Trump.

    2. I wonder how Bailey would feel if someone used his disclosed DNA information to create a Bailey clone and then proceeded to not vaccinate that clone repeatedly.

  3. “Schumer wants the Federal Trade Commission to investigate the situation, with an eye toward establishing rules that forbid testing companies from sharing your genetic information with other companies or researchers” Note that Schumer doesn’t want to protect your information from being shared with the government.

    I also note that almost all of the companies’ policies refer to not sharing with any third-party. The one notable exception being ancestry.com which seems to say they will provide your info in response to various legal matters like laws/subpoenas/warrants or simply in response to a government request.

    1. This was the comment i was going to make. Fuck the third party doctrine.

    2. C: Actually, all of them have clauses alerting users to the fact that they may be compelled by government authorities to turn over info to them. Most also say that they will try to let users know when this happens. But given the prevalence of gag orders, that’s likely a noble aspiration.

      1. Thanks Ron. I’m far too lazy to have chased that down myself. And, I understand why they would take the position. The part that struck me was ancestry’s “or governmental or regulatory request”. Without starting a fight over oxford commas and all that crap, it seems to be written in a way that those requests would be beyond a law, regulation, or valid legal process. In other words, they might do it simply because someone with a badge shows up and asks for it.

        But, I also recognize that these are companies that have minimal interest in engaging the government in a fight over privacy, FISA, and gag orders. They’d probably be willing to lose the more libertarian customer demographic than have that fight. OTOH, a company that cares about encryption can’t simply concede on that.

      2. Also thanks for covering the topic. I’ve been curious about 23 for a while. Finally, said screw it and ordered a kit. I’ll be curious to see if, after submitting the kit and getting results, I’m suddenly bombarded with advertisements for low-cholesterol diets and hair-replacement products.

        1. I’ve been a customer for several years – because of Bailey – and I’ve never noticed any kind of marketing that I could even remotely attribute to my 23andMe connection.

        2. C: Sadly the FDA banned the company from providing you with some interesting information about 140 different health risks and pharmaceutical interactions that it could offer early customers. Recently, the FDA under Gottlieb is apparently going to loosen up a bit. In any case, you can always submit your raw data to platforms like Promethease which can provide (in a clunky way) that sort of information.

  4. Studies have shown that political orientation can be as much as 50 percent determined by genetics. Obama believed that Attack Watch was a good and necessary thing and was unashamed to weaponize the IRS or FBI in pursuit of political opponents. The current CIC is notoriously thin skinned and has apparently confined his attacks on political enemies to Twitter, but time will tell if he has done similar things as his predecessor.

    How long before a president uses the genetic registry to determine who gets special attention from law enforcement or maybe who gets loaded on the cattle cars to go to camp?

  5. So having a database of all our genetic codes won’t be useful later when trying to identify citizens that are a “danger” to the State. Got it.

    1. B-M: Much bigger problems with authoritarianism will have occurred well before we have to worry about tyrants using genetic databases to identify dissidents.

      1. B-M! Now that’s funny right there.

      2. IDK Ron, look how bad things got with illegal data collection by the Feds before anyone even noticed anything. Even though I’m happy with 23andMe and not worried, it’s plausible that this could become a problem before we’re even aware of it.

      3. Thanks for the reply Ron. Going to have to disagree on that point sir. Government has done far more damage with less information. Thanks for being a bright spot on this site.

  6. Schemer is an imbecile; if he’s for something, even something I approve of, I would have to give serious consideration to being against it.

  7. Know what, Chuck? We are far more worried about government snooping (i.e., YOU GUYS) than about 23andMe’s possible snooping.

    So, fuck you, Chuck: CUT SPENDING!
    (Not that he would even dream of ever doing that, of course.)

    1. If he’s really worried about snooping, he should be proposing a law that forbids government from demanding genetic information from private testing companies.

  8. Maybe congress should be required to disclose their DNA, just like finances; then when they discover the stupid gene, we will already have the data.
    Maybe Chuck should realize that other than democrats, people can actually think on their own.
    Maybe elections should be free and fair.
    Maybe the federal budget should balance.
    Maybe John Galt is real.

    1. Fact: the Congressional genome only contains three nucleobases.

      1. So, are they some kind of weird RNA-only creatures or something?

  9. Hey, Senator Fuckstick: concentrate on doing your job, i.e. keep government snoops out of my business. I’ll take care of the rest.

  10. Warren wasn’t happy her ancestry.com test showed zero native american blood. So she complained to Schumer about fraud.

  11. I hope Chuck Schumer does not find out about Ouija boards.

  12. Wait, so it’s a fact that homo sapiens bred with homo neanderthalensis?

    1. Yep. Neanderthal DNA has been found in every human population outside of sub-Saharan Africa, and 3-5% of the Melanesian/Australian aboriginal genome comes from yet another hominid, Denisovans.

      1. So Dennis Rodman was really going to North Korea as a cover to visit all his kids in Melanesia?

  13. And what is the policy when the government comes knocking for your dna info?

  14. Ha! I’ve got you beat Bailey: I have more Neanderthal genes than 97% of all 23andMe customers. This explains my overall hulking presentation and coarse facial features*.

    I’m 99.8 European, but I think my ancestors had more fun than yours: I’ve got British & Irish, Scandinavian, and French & German at 20, 15, and 10 percent. 6% of me comes from those freaky Eastern Europeans.

    I also found out, to no surprise whatsoever, that I have stinky armpits.

    *Ummm, no

    1. I have more Neanderthal genes than 97% of all 23andMe customers.

      Damn it! I’m at 96%.

      Muh people! We were victims of genocide by the Sapiens Supremacists!

      Reparations Now!

  15. I bought my mom and dad kits a couple weeks ago when they were only 50 bucks a piece.

    1. Not bad. Though I only did mine because I got it for free by qualifying for one of their studies into mental illness.

  16. Establishing uniform legal standards to govern the use of our genetic information seems like a good idea.

  17. Use a fake name. Pay with a gift card.

  18. Here is a legitimate scenario. Police find your dna at a crime scene. They submit it to 23andMe. They will get a report of all “relatives” in the database which will include a suspiciously high match.

    Then they ask 23andMe for all available account information on you.

    1. But even if you don’t use the service, if your parent or cousin does, they will figure out who you are.

      1. BJ: Familial DNA searching to identify crime suspects using data in forensic databases is already happening.

  19. This reminds me of the time Uncle Ruckus found out his genes were 102% African with a 2% margin of error.

  20. I have gone so far as to post publically my 23andMe genotype scanning results. My results are constantly updated as new information about the genetic variants tested for become available.

    Ron, you skipped over the most important part of all of this.

    Your Promethease report compares your raw DNA samples from 23andMe to the ever expanding SNPedia database mapping genes to health issues. The report has a ton more analysis than 23andMe, and probably always will, or at least until the FDA gets around to banning it. It’s all for $5. For a few dollars more, Promethease will provide broader coverage of your genome by combining your genomic raw data from multiple genomic scans from different vendors like Ancestry, or different versions of scans from the same company.

    SNPedia has almost double the snps for Ancestry as 23andMe, though I have no idea of one company focused on more medically useful snps than the other.

    Your Promethease scan is almost 2 years old! You’re missing out on 2 years of science, which is probably a doubling or two of information.

  21. Everyone who purchased 23andMe kits in the past should check their email for 23andmesettlement.com

    23andMe got sued in a class action. From the site:

    If you purchased a PGS, “Personal Genome Service”, from 23andMe.com from October 16, 2007, to November 22, 2013, you are included in a settlement and may receive cash compensation.

    You can get back cash, or credit toward the purchase of more kits.

    December 6th is the last day to file

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