I think everyone should be able to read the above - let me know if you can’t.
23 and Me filled for bankruptcy. I never pursued this service but know plenty of people who did. Do you have any concerns about your data falling into the hands of a new owner should it be bought?
I deleted mine, and in the process was reminded of several bizarre findings, like my DNA predicts that I’m slightly less likely to enjoy cilantro (true), have more earwax (false), and am likely to wake up at 6:50 am (??). Good luck making anything of that!
It took a bit of time but I think mine is finally deleted. I am also not keen on cilantro. And I can’t match a musical pitch- very true!
I deleted mine. I really hope that did the trick.
I’m going to wait to see what happens for a bit. If Anne Wojcicki buys it, which is the rumor (and seemingly why she resigned to make buying it more straightforward) I will probably keep my data there. But if there’s a different buyer, especially a health insurer, I will delete it.
I truly hope that deleting the data means actually deleting it.
It never does.
Exactly. That’s why I never used them. Whoever wants my DNA will get it, but I’m not paying someone to tell me I love cilantro and can roll my tongue.
I never used this (or any similar service).
I have seen a video about deleting that data that says to make sure you delete the storage (if you took that option) before deleting the data because after you delete the data you cannot log back into your account to request to delete the storage.
Some seem to think deleting the data also means the storage will be deleted as well. It seems unclear, so this person recommended doing that storage deletion as a first step. I’m not sure anyone really knows.
That seems like good advice. I did not have them keep/store my saliva sample.
If you want my DNA you’ll need a warrant or court order. 
What exactly might the harm be in having my DNA fall into ‘other’ hands? I can’t be denied medical insurance. Life insurance? I already have a policy. Employment? I’m retired.
Am I missing something? My hospital also has my DNA since I was tested for a gene that raises my risk of cancer. My My Chart could be hacked.
Your DNA was tested for a presence of a specific gene; I assume it did not involve the whole genome sequencing, and your lab samples were discarded after that. Plus, your medical records are subject to privacy laws- at least for now.
There are myriads of genes. To look for each and every one of them, the entire genome needs to be read. Despite of what the news says, it is still too expensive and too time to do so. However, the sequencing technology evolves (despite its low funding), and someday the stored samples with their identifying information can be read by insurers if the cost benefit analysis points in favor of denying coverage based on sequencing data.
Okay. Insurance denial but I am on Medicare. And even if I were on other insurance I couldn’t be denied for having a gene that predisposed me to disease.
Your comfort level defines what you personally do, but others can decide for themselves.
If we put just 1/1000 of what is spent on AI investments into development of new sequencing technologies, that $100 (ok, $300 with the inflation ) genome would be here in no time.
Here’s a discussion with some good things to consider:
Such as:
You are not covered by HIPAA
The Health Insurance Portability Accountability Act (HIPAA) is the law that, among other things, when you speak to your doctor, creates rules about what can be shared under what context. The problem is that HIPAA’s definition of covered entities and business associates means that when you have provided information, including your genetic data, not to a hospital system, not to a physician, but to a direct-to-consumer company like 23andMe, you are not covered by HIPAA. You are treated by the law essentially as a consumer, not as the patient.
You have no control over what is done with your data
…the privacy statement reserves the company’s right to transfer customers’ personal information in the event of a sale or bankruptcy, and customers can’t protect their data from being accessed, sold, or transferred as part of that transaction.
And, there are serious security issues
…the Pentagon told military personnel not to use these at-home DNA kits because it was concerned about national security. A more quotidian concern is that your genetic information might become available to others, and it’s possible you could become reidentified.
Just like AI, the issue is not the technology, it’s what it can be used for in the hands of bad actors. And we have plenty of those.
Unfortunately, there is no need for anyone else to spit or swab to identify any of us. The combined DNA databases out there now are sufficiently large to identify all of us through triangulation.
From The Lost Family: How DNA Testing is Upending Who We Are (sorry for the awkward cuts):
We surpassed these conditions long ago.
I absolutely wouldn’t do one of these, but unfortunately my brother did, so I feel my DNA is basically out there anyway, not exactly but close. And he sees no reason to delete, which I don’t understand since he’s got the information downloaded.
Exactly. The Golden State Killer was captured using a triangulation of relative’s DNA and mundane records. We like the idea of catching monsters, but the data can also identify any of us for any reason. It’s magical thinking to believe that this information will never be used against any of us.
ETA: I don’t have a tin foil hat. I have a son in national security.
Still trying to determine what specifically could be done to my detriment with my DNA.
