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How to Delete Your 23andMe Data

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Re: How to Delete Your 23andMe Data

#2
This feels as hopeless as trying to keep your email/contacts from social media sites. Even if you are vigilant about never allowing an app/service to download your contacts, your friends will share theirs and it is trivial to recreate your contact list. If I keep my DNA from these companies, my relatives will share theirs and they basically have my DNA.

Re: How to Delete Your 23andMe Data

#4
Note that despite any requests the genetic data and some personal information (DOB and sex) probably won't be deleted, at least because of CLIA requirements: https://news.ycombinator.com/item?id=41781879 (more details in https://bourniquelaw.com/2024/10/09/data-23-and-me/, linked from the thread there)

Re: How to Delete Your 23andMe Data

#5
post #4

Note that despite any requests the genetic data and some personal information (DOB and sex) probably won't be deleted, at least because of CLIA requirements: https://news.ycombinator.com/item?id=41781879 (more details in https://bourniquelaw.com/2024/10/09/data-23-and-me/ , linked from the thread there)

Here's a great post by a lawyer, linked to further down in that thread: https://bourniquelaw.com/2024/10/09/data-23-and-me/ It suggests a way to challenge them on their assertions that they must keep your data and samples.

Re: How to Delete Your 23andMe Data

#6
post #2

This feels as hopeless as trying to keep your email/contacts from social media sites. Even if you are vigilant about never allowing an app/service to download your contacts, your friends will share theirs and it is trivial to recreate your contact list. If I keep my DNA from these companies, my relatives will share theirs and they basically have my DNA.

> This feels as hopeless as trying to keep your email/contacts from social media sites.

The cynic in me agrees, but the process was quick and easy, and I know I'm not safer by not deleting my information from 23andMe. I recommend it.

Re: How to Delete Your 23andMe Data

#7
post #5
post #4

Note that despite any requests the genetic data and some personal information (DOB and sex) probably won't be deleted, at least because of CLIA requirements: https://news.ycombinator.com/item?id=41781879 (more details in https://bourniquelaw.com/2024/10/09/data-23-and-me/ , linked from the thread there)

Here's a great post by a lawyer, linked to further down in that thread: https://bourniquelaw.com/2024/10/09/data-23-and-me/ It suggests a way to challenge them on their assertions that they must keep your data and samples.

I'm sorry but this lawyer has absolutely no idea what he is talking about with regards to CLIA compliance. And he even admits as much, but keeps talking anyway.

Re: How to Delete Your 23andMe Data

#9
post #5

Earlier quoted context omitted.

Here's a great post by a lawyer, linked to further down in that thread: https://bourniquelaw.com/2024/10/09/data-23-and-me/ It suggests a way to challenge them on their assertions that they must keep your data and samples.

I'm sorry but this lawyer has absolutely no idea what he is talking about with regards to CLIA compliance. And he even admits as much, but keeps talking anyway.

CLIA is one of the excuses 23andMe uses to explain why they retain your genetic information, date of birth, and sex. The author cites the code sections he believes 23andMe are referencing to make this claim, then explains why he believes it doesn't apply. As a CLIA expert, do you mind explaining what he's getting wrong for our benefit?

Re: How to Delete Your 23andMe Data

#10

To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.

But it creates legal grounds for lawsuits if they don't.
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