
How to Delete Your Data from 23andMe, Ancestry, and Other Sites - pfarnsworth
https://www.consumerreports.org/health-privacy/how-to-delete-genetic-data-from-23andme-ancrestry-other-sites/
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IfOnlyYouKnew
As some recent stories showed, the problem (if any) isn’t so much your DNA, as
that of relatives. Deletion requests aren’t going to be much help here, unless
you can convince a rather large majority of people to follow along.

Fundamentally, this seems to be one of those “negative externalities” that you
cannot protect yourself from with individual action. Nor can I think of any
technological fixes that would allow these companies to continue offering the
same features without storing this data. Although they could obviously offer
stripped down versions where you get an analysis one and data is erased
afterwards.

The only promising route I can see here is a political / legal framework
establishing a transparent process with high hurdles to the use of this data.
I believe other medical data is already protected in such a way, i. e. with a
higher standard, and more oversight than, say, a plumber’s files or even
financial data. Genetic data seems to creep people out across all typical
political boundaries, and this should be an easy sell.

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OkGoDoIt
They already offer the option to not store raw data and just get a one time
analysis. I believe the terms say they store it for 3 months, although I don’t
remember exactly. That’s what I did with 23AndMe. I also falsified all the
personal information I could except for approximate age, gender, and ethnicity
since I figure that affects the readings. Doesn’t help me if my extended
family decides to use the kits, but it seemed an acceptable middle ground to
satisfy my curiosity of trying the service myself with my paranoia about how
they would use my data.

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bitxbitxbitcoin
I would rather them never have my data in the first place.

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pfarnsworth
All it takes is for someone in your family tree to submit their data, and your
data is partially in there.

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stallmanite
Exactly. Thanks for submitting this link. The fact that it is aimed at non-
techies and is published by a mainstream source gave me the confidence to
forward it to two of my grandparents who have submitted such dna samples and
basically beg them to have their (and mine and my children’s) data deleted. I
have been aware of these issues for a long time and you can imagine how
displeased I was to find out that 1/4 of my DNA had been signed away for
little benefit.

