And...
"Unless you choose to store your sample with 23andMe (called consent to "bio-banking", which can be found here and changed in your settings), your saliva samples and DNA are destroyed after the laboratory completes its work, unless the laboratory's legal and regulatory requirements require it to maintain physical samples."
I could be wrong but in a lot of cases in the US, labs are required to hold data for at least 2 years
[0] "23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking." - https://www.forbes.com/sites/matthewherper/2015/01/06/surpri...
Unless they provide an anonymous way of consuming their product I would never. ever. EVER. give a for-profit company my genetic data (and it's debatable who owns that data because last time I checked lawmakers don't really give a shit about information ownership unless it's about Hollywood) and have them tie it to my name. Fuck that!
Might be important if you were planning on a life of crime, or if you owe someone child support. But for the moment there's no good way to use them to make money off you.
In the US, the protections against insurance companies using your genetic data against you are about as deeply entrenched as the protections against letting ISPs sell your internet history, and subject to much more intensive lobbying. Other countries have no protections at all - Canada's current bill is strongly opposed by the Trudeau government. Remember, even though most of these genetic risk scores are incredibly weak predictors, it is only necessary for insurers to believe they improve their actuarial models slightly to have a huge effect on differential insurance costs.
I'm very sad reading statements like this on hackernews.
Is that really an argument when it comes to privacy? Especially these days?
'crime' is a generic term which can change depending on who's in charge of the country.
That [...] could hide a lot of shady stuff being done via NSLs (etc.).
EDIT: There is a very interesting issue here, though, namely how the findings by 23andme are presented to their customers. There's good research that shows that presenting relative probabilities[2] (as opposed to just picking a sample size and doing everything in numbers relative to that) is very hard to understand for the general public (and even for statisticians unless they're paying close attention!). The Base Rate Fallacy is basically a consequence of presentation. Hopefully, 23andme are doing this responsibly, but I honestly don't know.
[2]: Example: "Eating X increases risk of cancer by 50%". Well, yeah, that might change my risk of cancer from 0.01% to 0.015%, but that that's not something I should worry about. Yet, we see these headlines because they grab people's attention.
For instance, doesn't this mean that a hypothetical future 23andMe drowning in debit could be acquired by a company who could use the data for all sorts of terrible things without ever technically selling it to a third party?
Instead of putting customer data up for sale they essentially just split off the portion of the company that held the data and put that up to be acquired.
0. http://gizmodo.com/of-course-23andmes-business-plan-has-been...
I mean sure, I could be way off, but I could also totally see any of my family members taking the test out of curiosity and I don't see any of them announcing it beforehand. I totally see the genealogy use case as a gateway drug to making this more popular.
https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data to https://www.promethease.com/ for interpretation.
It reminded me a bit of an RPG character sheet: +60% resistance to prostate cancer, 2x weakness to alcoholism.
You say that, but at the lab where I work, that level of quality would be a big fat fail - re-sequence the sample and get more data. They further describe their sequencing quality as "≥ 90% loci with 20x or more coverage AND ≥ 99% loci with 1x or more coverage". That's poor quality - very poor quality. We aim for 97% coverage at 20X and routinely get 98.5% They only get away with saying "Genos yields 50 times more data than comparable services" because they are comparing against 23andme, which uses a completely different test methodology.
Separately, can I get in touch with you somehow? I am dealing with clinical genetics as a patient right now, and would love to get some advice.
They talk about confirming variants using Sanger sequencing, but there is quite a bit of talk nowadays of stopping doing that, because NGS is becoming more reliable than Sanger. The problem with NGS is false positives, and the problem with Sanger is false negatives due to allelic dropout (the strand of DNA with the variant doesn't make it to the sequencer, so all you see is normal DNA). There is some concern that doing Sanger confirmation is rejecting more true positives than it is correcting false positives.
Our lab is both clinical and research. We don't do many research whole exomes any more - mostly doing whole genome instead.
You could mail me at nc74rmec@pliggle.homeip.net if you want. (Yes, that's a throwaway address.) Not sure I can advise you much though.