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Comment by drugme | Hacker News Reader

I wouldn't mind paying a fair sum for a service that would:

(1) reasonably guarantee that my data not only won't be distributed - but will be destroyed (on their side) within a short time frame

(2) give me access to all of the raw data and methodologies used in their analysis

Does anyone know of such a service?

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The only reasonable way of achieving those goals would be to allow totally anonymous submissions. Mail in a sample and simply have a code that you keep to check on results once they are processed.

The fact that none of these services allow for anonymous submission should be a huge tell about their real motivations.

That would help, to a degree.

But ultimately any kind of DNA analysis (that exposes the raw data) is intrinsically de-anonymizable, no?

Anonymous submissions are in theory somewhat feasible, albeit cumbersome. You can by the 23andme kits with the full fee paid from certain pharmacies (I think Target had them) using cash. This means you don't have to put down a credit card when signing up. I leave the rest to the reader to work out wrt anonymizing themselves while signing up to the website.

Err, isn't the first thing they do is link up the new submission with every other submission ever received in the past or future, almost none of which are anonymous?

Sure, you can be anonymous, but you're the son of John and Jane Tompkins, the brother of Emily Tompkins, the cousin of Mary Smith, and the father of Dave and Buster Tompkins.... huh, I wonder who you are.

Very good point. Added requirement: Make sure all your ancestors and extended family are dead and did not do 23andme before their passing.

Unless things have changed, this is exactly how 23AndMe works. You get a kit and send it in, then you just have an ID number that ties that kit back to you for setting up your account.

That might work until you have relatives who did not do it anonymously...then you get outed by the DNA istelf. A service that destroyed your sample and record after processing would help in this regard.

23andme does destroy your samples, and the genotype tests are not very useful for determining paternity.

> none of these services allow for anonymous submission

You're incorrect. At the company I work for, which is one of them mentioned in the article, a customer pays for DNA sequencing and analysis. Who pays for it is often separate from who's being analysed. We often have customers who pay for products for their family, friends, or otherwise. The name on the DNA sample is not verified in any way shape or form (and how could we verify it beyond just billing information?) You can opt-in or opt-out of public matching. You can download your raw data anyway (GDPR requires this if you're an EU citizen).

> should be a huge tell about their real motivations

I would like it if you'd elaborate on this.

> I would like it if you'd elaborate on this.

I don't have an opinion about this, but they're probably implying that the business model is the same as Google, Facebook, et. al., which is selling user data to third parties.

That would also help against the (hypothetical?) possibility that data mining sector creates "DNA testing" front companies, which do no testing whatsoever, and simply sell you a pretty printed conclusion from your cyber profile... without oversight anything goes

That would fall under "unfair and deceptive business practices" which there are laws against.

obviously, but a law alone can only protect you when the deception is detected. the proposal to somehow fully anonymously (so somehow also not through the usual mail system) submit the material and code would be a preventive measure

1) Pay for sequencing, get raw FASTQ or CSV files. 2) Run your own analysis. Open source industry standard software exists.

Is this actually an option with the popular companies?

It's not advertised as such but yes, several companies allow you to obtain the "raw data" from the sequencer. The raw data is what gets fed into the analysis software which produces relationship and heritage estimates.

It's also worth noting that if the company sells analysis products to EU residents then GDPR may require those companies to make the raw data available to the customer anyway.

Might look into Dante Labs. I was fairly happy with their privacy policies and ordered a kit during black Friday for 200USD

Were you able to get the results from Dante yet? I am curious to see how they differ from 23andMe in report quality.

Don't most services provide (2)? You can download the raw data. It's not your full DNA sequenced or anything, they only do genotyping, i.e. only test for genes that are known to differ between individuals, I don't think there's a consumer service that does full gene sequencing for a reasonable price.

same here. I really want to learn more about my past and also learn about my DNA (and all there is to learn with that data), but the invasion of privacy by such companies is just unacceptable (hence my refusal to take such tests).

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