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What options do we have to delete our data? Anyone looked in detail? [edit] From their website: Data retention 23andMe will retain some information to

What options do we have to delete our data? Anyone looked in detail? [edit] From their website: Data retention 23andMe will retain some information to comply with legal obligations, including your DNA, sex, and date of birth So apparently you can permanently delete your data, except for, oh just your DNA.... [edit 2] From NYT (https://archive.is/ynvDR https://archive.is/ynvDR) However, 23andMe uses a laboratory that must follow regulations under the Clinical Laboratory Improvement Amendments, or CLIA. This means that some data, including your DNA, sex and date of birth will be retained in order to comply with these regulations. The company will no longer use that information, though. You can read more about the company’s deletion processhere.

freeqaz 2y ago
That's absurd. I wonder why? Because they need it to make their family tree work? Does anybody know why?
- jayknight 2y ago
  Here are the CLIA retention regulations. https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-G/part-493/subpart-J/section-493.1105 https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-...
  - justinclift 2y ago
    Doesn't seem like it's that then. Tissue. Preserve remnants of tissue for pathology examination until a diagnosis is made on the specimen. Depending on what "until a diagnosis is made" would mean in the 23andMe context.
hedora 2y ago
…because it would be illegal for them not to keep it? I wonder which law supposedly says this.
- matrix2003 2y ago
  I misinterpret 23andme results and believe I have a horrific genetic condition. I then delete my data, commit suicide, and my family sues the company. I’m not saying this is what they are worried about, but it could be something along those lines. I work in big finance, and there is a LOT of regulation around data retention, and it’s a lot more nuanced than people think. Should we be allowed to delete the data? Absolutely. This will likely be a hallmark case setting president for the future.
  - notpushkin 2y ago
    That’s one amusing typo. (Won’t lie, I did consider for a moment what would happen if setting president was done by someone’s DNA.)
    - matrix2003 2y ago
      Ha! Whoops!!
  - sorokod 2y ago
    Why would the data being deleted be a precondition to a law suit in this scenario?
    - ossyrial 2y ago
      It wouldn't, but 23andme keeping DNA data means that they would easily be able to deal with the lawsuit in this hypothetical scenario.
- rolph 2y ago
  stonewalling, using the law as an excuse for noncompliance. i suspect heavy coercion has occured, its too useful to agencies to let it be deleted.
EasyMark 2y ago
I looked at the 1988 law, nothing in there said they had to keep DNA and it wasn’t even mentioned. They are lying or being very liberal with their interpretation of the law to benefit themselves financially.
webninja 2y ago
Has anyone here had success with deleting their 23 & Me data or data of a deceased relative?
- carimura 2y ago
  it's easy to delete your account and "data", but their policy claims they keep a bunch of it around. I just emailed their privacy email address to find out if they can provide more information.

freeqaz 2y ago

That's absurd. I wonder why? Because they need it to make their family tree work? Does anybody know why?

jayknight 2y ago
Here are the CLIA retention regulations. https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-G/part-493/subpart-J/section-493.1105 https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-...
- justinclift 2y ago
  Doesn't seem like it's that then. Tissue. Preserve remnants of tissue for pathology examination until a diagnosis is made on the specimen. Depending on what "until a diagnosis is made" would mean in the 23andMe context.

hedora 2y ago

…because it would be illegal for them not to keep it? I wonder which law supposedly says this.

matrix2003 2y ago
I misinterpret 23andme results and believe I have a horrific genetic condition. I then delete my data, commit suicide, and my family sues the company. I’m not saying this is what they are worried about, but it could be something along those lines. I work in big finance, and there is a LOT of regulation around data retention, and it’s a lot more nuanced than people think. Should we be allowed to delete the data? Absolutely. This will likely be a hallmark case setting president for the future.
- notpushkin 2y ago
  That’s one amusing typo. (Won’t lie, I did consider for a moment what would happen if setting president was done by someone’s DNA.)
  - matrix2003 2y ago
    Ha! Whoops!!
- sorokod 2y ago
  Why would the data being deleted be a precondition to a law suit in this scenario?
  - ossyrial 2y ago
    It wouldn't, but 23andme keeping DNA data means that they would easily be able to deal with the lawsuit in this hypothetical scenario.
rolph 2y ago
stonewalling, using the law as an excuse for noncompliance. i suspect heavy coercion has occured, its too useful to agencies to let it be deleted.

EasyMark 2y ago

I looked at the 1988 law, nothing in there said they had to keep DNA and it wasn’t even mentioned. They are lying or being very liberal with their interpretation of the law to benefit themselves financially.

webninja 2y ago

Has anyone here had success with deleting their 23 & Me data or data of a deceased relative?

carimura 2y ago
it's easy to delete your account and "data", but their policy claims they keep a bunch of it around. I just emailed their privacy email address to find out if they can provide more information.