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How to Delete Your 23andMe Data

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Re: How to Delete Your 23andMe Data

#101

Post by ashoeafoot »

Oh, the scams i have to show you, such sights to behold :

"Dear Sir,Madam

while reading a recently acquired db, i came across your brother in law who has disease xy. Now, me being a decent person, i kept things qiet for now. No need to rattle potential love interests , your children or the community with news about this genetic curse. If you want this silence to last, just subscribe by donating 0.01 bitcoin per year to the Mammal & Animal Foundation for Integrity Agency."

This right here is the chernobyll of privacy.

Re: How to Delete Your 23andMe Data

#102

Post by [deleted] »

dragonwriter wrote: post #93
AStonesThrow wrote: post #76

Earlier quoted context omitted.

HIPAA isn’t really a personal privacy regulation at all ... Like other privacy regulation, it’s there to protect the industry and their business/commercial interests. Barriers to access mean less controversy, fewer lawsuits, fewer investigative news stories, fewer insurance disputes. I’d say it’s also designed to reduce contamination or adulteration of data: if every facility needs to do new testing and new evaluatio…

> HIPAA isn’t really a personal privacy regulation at all ... HIPAA as a whole is not. The HIPAA Privacy and Security Rules, which are enforced by a different entity than the rest of HIPAA, are (the bulk of HIPAA is insurance administration rules enforced by the Centers for Medicare and Medicaid Services; the Privacy and Security Rules are personal privacy and information security rules enforced by the DHHS Office of…

[deleted]

Re: How to Delete Your 23andMe Data

#103

Post by beaugunderson »

linsomniac wrote: post #77
echelon wrote: post #22

Earlier quoted context omitted.

Enough to be denied insurance, have job offers rescinded, or be targeted by scams. And they don't even have to have your DNA. Just a close enough relative will do.

Question: How are they going to link the DNA to people? Some will be easier than others, sure. I'm trying to decide how "safe" my data is, since I created a single-use gmail account, with fictitious name, and paid for it with a gift card. I was afraid that some information in there might lead to being uninsurable, so I decided to row away from the rocks. Thankfully, my genetics didn't pop up any red flags, knock on w…

Genetic data like what 23andMe has is enough to guess at your surname, provided any of your relatives have signed up.

See Latanya Sweeney's work for more information: https://latanyasweeney.org/work/genomic.html

Re: How to Delete Your 23andMe Data

#104

Post by vintermann »

echelon wrote: post #36
a2dam wrote: post #32

Earlier quoted context omitted.

The Genetic Information Nondiscrimination Act makes it illegal to adjust health (but not life) insurance premiums or discriminate for employment based on genetic information. Couples who do genetic testing before having kids have the same protections and they're very effective.

Companies do illegal things all the time . And let me flip this situation: are there any laws that prevent advertisers from looking at genetic data to target cohorts? If I were an unethical advertiser, I'd want to advertise to customers with less risk aversion, higher neuroticism, higher sense of FOMO. You could do some truly sickening stuff. Target higher mortality groups, certain personality types, cross reference…

Sure they do, but it's very hard to market illegal activities in a b2b context. How does 23andMe go about selling data allowing insurers to discriminate, without saying that's what they do?

I can think of a few things you could try, maybe. But judging from 23andMe's present state, it's clear that whatever things they tried to monetize customers' DNA info, didn't work out well for them.

Re: How to Delete Your 23andMe Data

#105

Post by vintermann »

robwwilliams wrote: post #54
progmetaldev wrote: post #48

Earlier quoted context omitted.

I see most comments concentrated on employment. For a scam, think of someone that has been told they have a specific genetic disease, and that information is available in their DNA "data". As a scammer, I can start to send you information about alternative health treatments specific to your disease, that have no scientific backing to them. Since I'm a scammer, I can write anything I want to, like stating that the inf…

Why not do all of this without the data. Saves the scammer a lot of money up front. Scammers are pros at making up plausible stories. And yet here we are 15 years into 23andMe —- have you ever heard of a genetics scam? I have not.

Well, I have, actually. There are heir-hunter scams. You're contacted by someone claiming to be from a lost heir hunting company. These companies claim to track down the closest relatives to people who died without known heirs, in return they get a share of the inheritance. So you can't bypass them, they won't tell you who you're supposedly the heir of. They promise they're not asking for money, only a share... until they do ask for money, of course.

This scam doesn't use your actual DNA data though, just the fact that you have a profile on a DNA site.

Re: How to Delete Your 23andMe Data

#106

Post by switch007 »

dylan604 wrote: post #73
ahmedfromtunis wrote: post #8

To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.

Also, what prevents new owners from restoring from backups because "we were hacked" or any other reason for retrieving backup data for something that is currently "deleted"?

Exactly. Once you give your data, you no longer have any control over it, forever.

Re: How to Delete Your 23andMe Data

#107

Post by StefanBatory »

robwwilliams wrote: post #62
consumer451 wrote: post #31

Earlier quoted context omitted.

> Enough to be denied insurance... Not just you, but your children who never had anything to do with 23andMe as well!

First, last time I checked this was illegal in the USA (2 years ago) even for life insurance. Second, no these data are not (yet) very informative for the subject, let alone for relatives, with the exception of monozygotic twins.

Illegal for now. Do you have any guarantee it won't change in the future?

Re: How to Delete Your 23andMe Data

#109

Post by StefanBatory »

rohan_ wrote: post #96

If 23andMe is bounded by the legal system - why shouldn't we trust them the same way we trust Dropbox not to sell our personal files? No one has been able to explain this to me.

Because on average your files on Dropbox are worth way less than your DNA.
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