Thanks for the AMA.
I want to get my genetic data, but, like obviously I don't want to go through one of these services where they ingest all that data and keep it around forever. Honestly, I'd like to be the only person with access to it and I can destroy it at will.
Tough requirements, I know.
Anyways, do you know of any services that meet those reqs? Any good DIY ideas?
Again, thanks for the AMA
I requested deletion of all my data to 23andme, but they said they keep “Genetic Information”. Does that mean 23andme still has my “SNPs”? (I’m based in Europe)
Message I received by email:
> 23andMe and the contracted genotyping laboratory will retain your Genetic Information, date of birth, and sex as required for compliance with legal obligations, pursuant to the federal Clinical Laboratory Improvement Amendments of 1988 and California laboratory regulations.
> 23andMe will retain limited information related to your deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request, for the establishment, exercise or defense of legal claims, and as otherwise permitted or required by applicable law.
I didn't follow competitors too closely, but Color may be what you're looking for. I don't know if they sell direct to consumer though.
If you use 23andMe, and request data deletion, they will do a best effort to delete the data. It's part of their GDPR requirement. When I was there, I worked on this project and they put a lot of effort into it. A big chunk of engineering org focused GDPR compliance for a month or two. They definitely don't intentionally keep data around if you request deletion.
The one caveat is that data deletion is hard, and its possible that some gets accidentally retained. I left the company over 5 years ago, so I don't know how good their deletion process is now.
One final note: to keep costs low, 23andMe doesn't look at your whole genome. They only look at a handful of "SNPs" in your genome that are known to be significant. If you've heard how we share 99.5% of our DNA with chimpanzees, this is what they're basing this on. They look at the <0.5% of DNA that commonly varies between humans.
The reason I mention this is that, if you're very interested in your DNA sequencing, you may want to opt for a higher cost service that does full genome analysis. I don't know any names but I believe there are some DNA services that do this.