4 ms·
I 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 "ap
by ptero 9y ago
I 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.
- toomuchtodo 9y agoThey do indeed care. My brother and I submitted a sample from my dying mother, which they were unable to process properly. We were offered a replacement kit, but at that point our mother had already passed away. When I conveyed this to 23andme, they refunded our kit cost and removed our mother's pending profile from my 23andme account. From their email: "Unfortunately it is not possible for us to unregister a kit after an initial sample fails analysis. Replacement kits are automatically registered to the individual the original kit was registered to, and they retain personal registration information including name, birthdate, and legal consent to our Terms of Service and research document. If we allow someone else to use the replacement kit, the sample would not be associated with their personal information. Additionally that person would not agree to our Terms of Service and provide legal consent for us to process their sample. For privacy and legal reasons, a replacement kit cannot be used by another individual."