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Comment by qball | Hacker News Reader

>Doesn't mean it won't be misused.

To add to this, though genetic information may be protected against defining a pre-existing medical condition for insurance purposes today, there's zero guarantee that that law protecting you will still exist in the future, or extend to your descendants (which can be assumed to carry roughly half of your genetic material).

Once you've given this data away without any guarantee that it'll be destroyed at the end (if such a thing is even possible), you can't take it back, and you could potentially be screwing over those who didn't make that choice.

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Thus comment and the parent are spot-on. The main protection against the adversarial use of genetic databin the US, GINA, is currently facing several challenges, mostly through the backdoor of opt-in employee wellness plans.

Additionally, while the SNP- format generic data provided by 23andMe is of marginal medical use to the average consumer, it is very valuable to insurance companies and others constructing population-level actuarial models, where a very tiny increased probability of developing a condition is enough to justify increased rates.

And finally, as these relative-discovery stories suggest, there really is no such thing as anonymized genetic data above a panel of a few SNPs. This data is part of the inherence class of factors in multifactor authentication, and can even be derived from pooled anonymized data by a motivated party.

What a group of friends has been doing is, they ordered +10 kits over a year shipped to the very same person, then they each of them spit and register the kit with a disposable email address. The info about the receiver is watered down (if he did one himself, which he didn't) and the rest remain reasonably anonymous as long as they keep using Tor/VPNs.

Moreover, these tests are forbidden in France, so these shipments are being sent to Monaco/Italy (1 hour drive from here), adding extra levels of law/tracking indirection.

Keeping your name and location anonymous doesn't matter. Once a company obtains a family member's DNA information through any other source, they will see a familial correlation, use other records to realize that family member has a brother/sister/etc and might now attribute that once-anonymous DNA record to you.

That's the scary thing about these companies: you might never even use the service, but once a relative does, the company now has information about you.

If insurance companies wanted genetic testing data they wouldn't bother trying to do a messy data join with a third-party database, they'd just make it a requirement to provide a swab/saliva sample for testing when you signed up.

Boiled frog fallacy. They won't be able to get away with it now, but as time goes on they'll start adding it as a voluntary option for a small discount, eventually ceasing to offer service otherwise.

Auto insurance is already well into the process of doing the same thing with regard to diagnostics data being transmitted back home from Snapshot devices/driver's aids.

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