3 ms·
> if I was a carrier for a serious genetic disease, I definitely would want access to that information I'd much rather get that information from an MD who is a
by ams6110 9y ago
> if I was a carrier for a serious genetic disease, I definitely would want access to that information
I'd much rather get that information from an MD who is at least bound by HIPPA regulations, than by a VC funded internet startup.
- cm2187 9y agoI completely agree with your distrust of a random startup, but I encourage you to exercise more caution about your MD. Not that he may have bad intentions but because most of them aren't really computer geeks and your personal information is quite likely to end up on a lost USB stick or out in the wild because of a bad shared password. I grew up in a family of doctors, and I heard things like them considering to sue google because a patient managed to find his medical record by googling his name. They are scientists, very educated people, but that doesn't mean they understand all technologies.
- wonderous 9y agoIs anyone able to providing a notable source on 23andme and their position on HIPAA regulations?
- dekhn 9y agoDo you have a specific question? Their position is that they follow the law where it applies to them.
- dragonwriter 9y ago23andMe isn't a HIPAA covered entity, and HIPAA regulations don't apply to then at all.
- ptero 9y agoI would much rather get it done anonymously through a VC funded startup than through an MD who is going to unambiguously tie it to my person, log it into an "approved" and "secure" storage and may be required to report it based on some currently unknown set of conditions ("do you have a predisposition to X? let us alert the right folks so they can check you out, just for your own benefit") I understand that with personal genetics you are unlikely to stay anonymous against a determined effort, but ATM I personally trust my government "trying to do good" less than I trust a random stranger who wants to make a predictable profit for his business. Just my 2c.
- cm2187 9y agoIf you have to submit a payment you aren't anonymous.
- bqe 9y agoSo a VC funded startup is not "a random stranger", but doctors are the government?
- ptero 9y agoDoctors are not government, but they are bound by a variety of government regulations (e.g., parent referenced HIPAA). I do trust my own physician, but he still has to report on me in certain cases or he will lose his license. For big, uncertain queries I initiate I would rather find the answer privately and then decide how public do I want this info to be. Otherwise I am afraid that my options will be curtailed: "did both of your parents have heart problems? sorry, we cannot take you on that climbing trip", etc.
- pavel_lishin 9y agoI was under the impression that 23andMe doesn't allow you to anonymously submit a genetic profile.
- carbine 9y agoSome people submit their DNA but switch up their gender so as to theoretically nullify the results for a potential future data breach. (Insurance providers being one concern here.) Does anyone know if/how 23andme addresses this, or do they care?
- pavel_lishin 9y agoThat... seems like literally the easiest thing to correct based on a genetic sample.
- subcosmos 9y agoSwitching the gender would be an ill-advised way to be anonymous. Its easily determined from the raw data itself, based on the presence of Y-chromosome SNPs. I have heard that some people prefer to use fake names, emails, prepaid credit cards, and use a PO box or some other mailing relay to mask their home address. I'm not sure if 23andMe cares about anonymous users, but they might care about survey results being faked in a large number of users, because that would affect their scientific mission of finding interesting patterns.