Item — HN Reader

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)

   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.

4 comments

…because it would be illegal for them not to keep it?

I wonder which law supposedly says this.

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.

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.)

Ha! Whoops!!

Why would the data being deleted be a precondition to a law suit in this scenario?

It wouldn't, but 23andme keeping DNA data means that they would easily be able to deal with the lawsuit in this hypothetical scenario.

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.

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

Here are the CLIA retention regulations.

https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-...

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.

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.

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

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.