152 comments
carimura · 74 days ago
I've been dealing with their support trying to delete my data. Here's the latest response [1]. The way I read it, they won't delete your genetic data, and it sure seems personally identifiable to me. Am I reading this wrong?

    [1] This is a follow-up from the 23andMe Team. Your 
    inquiry has been escalated to me for review. To clarify, 
    once you confirm your request to delete your account, we 
    will delete your data from our systems within 30 days, 
    unless we are required by law or regulation to 
    maintain data for a given timeframe.

    For example, your Genetic Information, date of birth, and     
    sex will be retained by 23andMe and our third party     
    genotyping laboratory as required for compliance with     
    applicable legal obligations, including the U.S. Federal     
    Clinical Laboratory Improvement Amendments of 1988 
    (CLIA), California Business and Professional Code 
    Section 1265, and College of American Pathologists 
    accreditation requirements.

    It is important to understand that the information stored     
    is distinct from the raw genotype data available within 
    your account. The raw data we receive from the lab 
    has not been processed by our interpretation software 
    to produce your individual-level genotype data (in 
    your account).

    You can read more about our retention requirements in the 
    retention of personal information section of our Privacy     
    Statement.

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roughly · 74 days ago
I’m in a weird spot with 23andMe - when I signed up, I used a fake name as a fig leaf in case they decided to sell to insurance or whatever. Since then, several members of my immediate family have all signed up, so “the child of X and the sibling of Y” means that fig leaf is pretty useless now - except I can’t issue an actual CCPA now, because fake name.

All of this is super predictable, but I wasn’t nearly cynical enough 15 years ago when I mailed my spit to them.

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filchermcurr · 74 days ago
I lied about my birth date and apparently there's no way to delete your data without the fake date or a photo ID... with the fake birth date...

sigh

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FloatArtifact · 74 days ago
They might delete it from their database, but it doesn't change the fact that it's been sold and shared in a way we can't also follow up and remove that information. There's no transparency. It not only implicates you, but your relations and future generations.

Genetic testing done through the hospital for a completely unrelated procedure can impact your life insurance. ( Example genetic testing for a child) Minnesota State Law prevents health insurance from changing. Laws need to protect right to know, not just right to use genetic information.

marcell · 74 days ago