Knowing you have a high susceptibility to a significant disease could have all sorts of implications for insurance - medical, life and even car.
In general insurance companies require you to disclose any and all information that you have that would be pertinent to them assessing risk. Clearly for medical and life insurance you knowing there is a high chance you will get Parkinsons (for example) is information your insurer would like to know - and presumably will have a negative impact on your coverage costs/availability.
Here in the US there are currently laws - such as Genetic Information Nondiscrimination Act (GINA) - to prevent insurance companies demanding this information.
However laws can be repealed. The insurance industry is the 'leader' in government lobbying. 23andMe is still subject to US federal subpoenas laws. 23andMe could be aquired by an insurance firm.
Also consider laws differ in other countries, where insurance companies might be able to legally demand results. In Canada insurance companies can not only request it, they can demand you get this kind of testing before you can obtain coverage.
Consider further that databases can be hacked/stolen (it seems to be happening to every email marketing company right now).
Think carefully whether you want your personal legal name and contact details all over the results of a test like this.
Also, the chances of 23andMe getting hacked are much lower than the chances of your friendly neighborhood email marketing company. I know since I built the site.
Account Closure and Correction of Personal Information
As stated in the applicable Consent Document, however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andWe Research will not be removed from ongoing or completed studies that use the information. Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies. In addition, we retain limited Registration Information related to your order history (e.g., name, contact, and transaction data) for accounting and compliance purposes.
Doesn't look like they're interested in totally zero'ing you out of all of their records even if you explicitly request it (acquisition or not).
In the event that 23andMe goes through a business transition such as a merger, acquisition by another company, or sale of all or a portion of its assets, your Personal Information will likely be among the assets transferred. In such a case, your information would remain subject to the promises made in any pre-existing Privacy Statement.
In the event that 23andMe goes through a business transition such as a merger, acquisition by another company, or sale of all or a portion of its assets, your personal information and non-personal information will likely be among the assets transferred. You will be notified in advance via email and prominent notice on our website of any such change in ownership or control of your personal information. We will require an acquiring company or merger agreement to uphold the material terms of this privacy statement, including honoring requests for account deletion.
I think khomenko is correct, with the exception you pointed out (ongoing studies).
1) Mailbox in SF's China Town (a number don't ask for ID even though they're supposed to legally request it). Many also don't speak much English so if anyone comes to investigate good luck to them.
2) Visa/Amex gift card purchased at Walgreens/Safeway in cash - ideally in a different city you happen to be visiting with no connection in. Las Vegas and New York are great choices.
3) Email address created and accessed via TOR within the incognito mode of the browser. Buy the 23andMe subscription/domain/hosting in the same way but making sure you are using a different TOR session.
I've used fake whois records for a while and have never had any problems. I did make my main domain "real" a few years ago to avoid any problems, however.
even if you've ordered under your own name, doesn't this suggest you could just maintain plausible deniability? surely a DNA test can connect it to you- but that would nullify the "john doe" tactic as well, no?
It seems the simplest step to prevent 23AndMe being forced to give up your genetic data at some future dystopic point has already been taken: they already have no way of knowing if it's actually your data. You can take anyone's DNA and call it yours, or give anyone else's name to your own DNA.
the insurance company could simply acquire a dna sample from you and check whether there is a match in the database?
a hackernews reader: https://github.com/orta/dna
It makes no sense. It's entirely irrational. I love information. Knowledge. Informed decision making. And yet . . .
Obviously, it's possible that a person could be given a more significant percentage of a serious condition which raises additional questions. If you are both A) objective enough to firmly grasp that a chance is simply a chance, not a sure outcome and B) not someone who worries a great deal about possible future situations, you might benefit from using 23andme. Otherwise, it may be wise not to purchase the program.
For me, I've had an interesting effect of using some of the increased negative risks to help me stop bad habits while at the same time, not using any of the decreased risks as a license to go ahead and live more recklessly in those areas. Hopefully this give you some additional perspective on whether something like this would be right for you.
If I knew I had a high-risk of Macular Degeneration, I might take some time now to learn Emacspeak or any of the other screen-reader technologies so that I could still do software development in the event that my vision left me.
( the average risk - is mostly unique value )
( for example: Restless Legs Syndrome [ avg risk: 2.0% ])
You can select which tests to make available to yourself, though, and avoid finding out about things like Parkinson's.
Not knowing if you'll get an untreatable disease doesn't stop you from getting an untreatable disease! It just means it'll sneak up on you and force you to make tough decisions with less preparation.
Not to get all Carpe Diem on you, but I'd suggest if this is true, you should probably re-evaluate your life. Whether your brain starts to rot at age 50, or you get hit by a bus in two weeks, you don't get to control how much time you have. You can only control what you do with that time.
What would you be doing so differently? I'm really just curious.
Think about it from the flip side: If you knew you were going to live to age 200 in good health, wouldn't you retire later? Maybe you'd spend more time gallivanting around the world like a recent college grad. Maybe you would wait longer to settle down and have children. Any deviation from the current typical life-span should definitely change your behavior.
I don't even like going to Web MD, in fear of exaggerating a condition or, even worse, synthesizing symptoms. I can't imagine knowing several years ahead of time that I have a high chance of developing this or that unpreventable disease. I'd probably end up seeing "signs" long before they ever presented themselves or perhaps even worsen my condition through the anxiety.
If you are already worrying about "obvious" things, wouldn't it be better to know whether or not you have anything to worry about? For instance, if it turns out you have a below-average chance of heart disease, it might make you worry less about your weight. On the other hand, if you discovered that you were (like me) at elevated risk of developing diabetes, wouldn't that provide the extra motivation you need to limit your suger intake and further control your weight?
I can't see any situation where having less data would make things demonstrably better -- just more uncertain.
However, if I go to the doctor and he says I'm at risk for environment factors for that, I'll know there's some serious shit to think about.
And it could save my life!
If you understand probability, then the data on 23andme will not destroy your life. It'll merely give you an additional warning sign of things to really pay attention to.
And if you choose, you can ignore it altogether.
This question of knowing your fate was well presented in Heinlen's short story Life-line: http://en.wikipedia.org/wiki/Life-Line
While I like the idea and being trailblazers must be done by someone you have to keep in mind that 23andMe only do genotyping not full sequencing.
In my mind the difference between genotyping and full sequencing is between building a partial array from bunch of if statements and actually copying the array.
And you can do things known to lower your risk, like start drinking caffeine every day.
I do really hope Halcyon (or another company) gets full sequencing costs down as low as they say they can. Then, sequencing becomes just a routine checkbox on blood tests.
Note that when buying add a one-year subscription which will bring the total price to $108.
My only fear at this point is them turning people over to evil scientists after finding out about their superpowers.