Sarah A. Downey is an attorney, aloofness analyst, and biographer at Abine, an online aloofness startup in Boston. Acquisition her on Twitter @SarahADowney.
If you’re like me, the abstraction of alive what’s in your abiogenetic contour is both alluring and scary. Appetite to apprentice about your ancestry? How about how acceptable you are to get Alzheimers or how fast your anatomy processes caffeine? All of these clues are in your genes, and the aggregation 23andMe can advice you ascertain them.
It’s the being of science fiction, but it’s already here. That’s why I capital to try out 23andMe as anon as I heard about it…but waited until I had the aloofness accoutrement to cull it off pseudonymously.
Let me explain why I didn’t appetite 23andMe to apperceive who I was. First, there’s the obvious. I accept I affliction acutely about privacy, but alike if you don’t, you accept to accept there’s article abashing about a massive company–and potentially the government–knowing your absolute abiogenetic code, abnormally if you don’t yet apperceive what it contains.
You’ve apparently bent at atomic some of the NSA annual this summer. One big takeaway from the surveillance revelations is that clandestine companies accept to about-face over chump advice aback the government asks. Chump advice is whatever the aggregation collects about you: emails, buzz calls, and, yes, alike your abiogenetic code.
That’s why today’s prevailing big abstracts business archetypal (“let’s aggregate every byte of chump abstracts we can and bulk out how to advertise it later”) is fundamentally adverse with privacy. And let’s not balloon that Google, one of the better suppliers of abstracts to the NSA and a PRISM company, is a advance broker in 23andMe. Note that some companies, like Wickr, DuckDuckGo, and Abine, (where I work) abbreviate that botheration by either not accession abstracts at all, or encrypting abstracts so it looks like nonsense to anyone attractive at it afterwards the password.
23andMe collects a accomplished lot of acutely claimed information, the affectionate of being that not aloof marketers, but additionally insurers, doctors, abeyant dates, employers, and arch-nemeses would adulation to get their easily on. They accept your absolute genome (the arrangement of nucleotides that accomplish up your DNA), your browsing action on their site, the advice you accommodate aback registering (like email and name), , date of birth, acclaim agenda number, the after-effects of any bloom or behavior-related quizzes on their armpit (which can accommodate ache conditions, ethnicity, and added bloom info), and more.
Not alone do they aggregate a lot of claimed information, but they allotment it in bristles ample situations, including with law administration (“Personal Advice may be accountable to acknowledgment pursuant to administrative or added government subpoenas, warrants, or orders, or in allocation with authoritative authorities.”)
That’s right: if the NSA comes animadversion at 23andMe and wants your abiogenetic code, they’re accepting it. There’s a aloofness exception–an NIH Confidentiality Certificate–if you’ve autonomous to participate in 23andMe’s IRB-approved research, but it’s array of a catch-22: either allotment your advice with the clandestine area (23andMe and their affiliates) and get added aloofness aegis from the government, or don’t allotment your advice with the clandestine area but get beneath aegis from the government.
Even admitting they action you during the signup action the adventitious let them abort your saliva sample, the aggregation still has the agenda almanac of your genome.
Likewise, the aggregation isn’t bright about whether you can anytime annul your abstracts from their servers. They say you can annul your annual by emailing chump support, but additionally say that they’ll “preserve and acknowledge any and all Claimed Advice to law administration agencies or others if appropriate to do so by law or in the acceptable acceptance acceptance that such canning or acknowledgment is analytic necessary.”
They additionally say they’ll acquaint you if law administration asked for your sample — that is, unless they’re beneath a gag order, which we now apperceive is appealing accepted for the NSA.
Let’s summarize: 23andMe has a ton of abstracts about you and they allotment it in assorted cases.
Now here’s my action for accepting my after-effects pseudonymously. Note that the aggregation still gets my abiogenetic code, but they don’t apperceive it’s mine. It’s not tied to my name or added abstracts that could be acclimated to articulation it to me.
First, any time I went to 23andMe’s site, I acclimated a few aloofness tools, including a Basic Clandestine Network (VPN) service. I acclimated Clandestine Wifi, but there are lots of acceptable options out there. This VPN annual lets you accept the defended server through which to run your web traffic; I chose Virginia. That additionally makes my IP abode arise as admitting I’m in Virginia, although I’m absolutely in Boston.
Then I opened a new Firefox window in Clandestine Browsing approach while active DoNotTrackMe, a tracker-blocker, and MaskMe, an add-on that creates aliases of your acquaintance and acquittal information, and went to 23andMe’s website (Full disclosure: My aggregation Abine makes both of these tools).
I put a kit in my arcade barrow and was asked to accommodate a name for it, so I gave a affected one. Aback bushing out aircraft information, I re-entered the aforementioned affected name and gave Abine’s address. I was able to do this because A), I absolutely assignment there and would get the package; and B), any basic cards created in MaskMe automatically accept Abine’s abode as the card’s announcement address.
I acclimated MaskMe to actualize a new alias email abode and auto-fill with my masked buzz number. Both of these aliases advanced to my absolute information, so I knew I’d still get email confirmations and buzz calls.
For billing, I afresh gave my affected name and Abine’s address, afresh generated a “Masked Card” in the bulk of the testing kit. Masked Cards are like basic prepaid acclaim cards, so the merchant doesn’t get your absolute acclaim agenda cardinal and your coffer doesn’t see area you spent it. Also, best online merchants don’t analysis for a bout on your name aback you use a acclaim card; they alone analysis for announcement address, acclaim agenda number, CVV, and cessation date, so you can use pseudonyms aback online arcade added generally than you may accept realized.
Using the alias email I’d aloof created and MaskMe’s countersign generator, I fabricated a new 23andMe account. MaskMe stored and encrypted this automatically. Because I had a altered email abode and password, no being or arrangement can assay me by cross-referencing anywhere abroad I’d re-used the aforementioned information, which is what happens afterwards hacks and abstracts breaches and in big abstracts marketing.
Once I arrested out, I went to my real, claimed inbox to complete the 23andMe allotment by beat the acceptance email, which was forwarded to me from the alias email address.
A few canicule later, I got my testing kit, about a box with a discharge tube in it. I had to annals it, so I accursed up my aloofness accoutrement again, logged into my 23andme account, and registered the kit’s bar code. They asked whether I capital my sample to be acclimated anonymously for their research; I said no. They asked whether I capital my sample destroyed afterwards testing; I said yes. However, I apperceive the agenda almanac of my genome is altered from my saliva sample, and they’ll still accept that potentially forever.
After abominably bushing up the tube with discharge in the boilerplate of the office, I closed it aback in the box and alone the pre-paid aircraft box into a mailbox. And then…I waited.
It took three weeks or so for my aboriginal accumulation of after-effects to appear in, which I was notified about through my alias email address. With my VPN clandestine browsing window DNTMe MaskMe combo, I went aback to 23andMe and logged in.
Before I could absolutely see my results, however, the armpit pestered me to ample in a lot added claimed information. Again, their aloofness action says they accomplish a contour of you that includes your answers to these autonomous questions. I had to hit “skip” apparently 6 times to assuredly ability my results. They absolutely advance this aspect of the service, alike putting a “to do” account on your home folio that you see every time you log in that begs you to “complete your bloom profile.”
You get two ample categories of results: bloom and ancestry. Bloom after-effects accommodate bloom risks, biologic responses, traits, and affiliated conditions. For example, you could acquisition out that you backpack the BMCA alteration that causes decidedly academy ante of blight (when Angelina Jolie begin out, she autonomous for a bifold mastectomy), that you’re likelier than best to accept Bipolar Disorder, or that you’re a carrier for Cystic Fibrosis. Actuality are some of my decreased risks:
More acute risks, like Alzheimer’s and Parkinson’s, crave you to absolutely accord your accord to appearance them by opting in and confirming. Some bloom providers and insurers accept behavior that crave you to acknowledge what you apperceive about your abiogenetic health, so blockage foolishly apprenticed is absolutely a tactic to abstain advice things to them. Plus you never apperceive if approaching laws will be allowable that affect acknowledgment duties.
23andMe’s “traits” area is beneath austere than bloom altitude but still interesting. I abstruse that I’m congenital for sprinting (true–I was captain of my academy clue team) and that I accept a “tendency to overeat” (Also true; if it’s in advanced of me, I will eat it, so don’t put it in advanced of me).
A anniversary or so later, I got my second, and final, set of results, which dealt with my ancestry. Afterwards accouterment your father’s sample, they can alone assay your mother’s side, on which I’m 100% Eastern European. They gave me a briefing of which countries they anticipate I’m from. Apparently, I’m additionally 2.7% Neanderthal, which is average.
The end aftereffect of my experiment? I got to acquisition out a lot of absorbing things about myself in barter for giving 23andMe my genome. Because they don’t apperceive it belongs to me personally, it’s of little use to them or any abstruse agents who appear attractive for it — although annihilation is guaranteed, of course.
Privacy has become article we accept to assignment for rather than article we apprehend by default, but I’m accommodating to put in the accomplishment like I did with 23andMe for the accord of mind.
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