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How to Delete Your 23andMe Data

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Re: How to Delete Your 23andMe Data

#61

Post by simplyinfinity »

lurkersince2013 wrote: post #57
partiallypro wrote: post #55

I know I'm in the vast minority here, but I honestly don't really care what is done with my DNA data as long as it's not used against me for healthcare & insurance purposes (which I believe is already illegal.) If someone wants to use it to make new drugs, research, etc, I just don't care.

Am sure there’s a very real possibility that some shady data brokers will ultimately gain access to the treasure trove of data before long - and am sure that in our capitalistic world healthcare and insurance companies would happily pay for access.

In the USA. In Europe and such, I'm not saying it's zero chance, but it's extremely unlikely. As Europeans don't rely on insurance for healthcare, but we use government for that :) ( the exception being, if you want private insurance if your government provided one isn't enough)

Re: How to Delete Your 23andMe Data

#62

Post by robwwilliams »

consumer451 wrote: post #31
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Enough to be denied insurance, have job offers rescinded, or be targeted by scams.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.

> 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.

Re: How to Delete Your 23andMe Data

#63

Post by dahinds »

dekhn wrote: post #47
dahinds wrote: post #41

Earlier quoted context omitted.

I would not argue with you on that it is "selling your data". But I also think there are meaningful differences in harm levels for different kinds of "selling your data", and fully identified data has more potential harms than de-identified data where you have to assume that an adversary is willing to violate contracts and/or the law to learn about particular individuals. There is considerable confusion about the dis…

I believe we're talking about de-identified individual-level data being sold or shared ( https://www.23andme.com/about/individual-data-consent/ ) in this thread. I don't think 23andme has been casual or callous with people's data; they are probably a step above the average firm that handles this sort of data. The consent process is well-documented. My complaint has always been about 23&Me has always been Anne Wojciki…

The top-of-thread linked to an article that was specifically about aggregated data sharing, not individual-level data sharing. The consent document you're linking to did not exist when that article was written; our general research consent only covers aggregated data sharing. It was only in 2018 that we added the second-level consent for individual-level data sharing.

I think we've generally been pretty careful to present only scientifically well supported results, which has not helped the perceived utility of our health product. There are certainly valid arguments to be had about the business model.

Re: How to Delete Your 23andMe Data

#64

Post by robwwilliams »

ziddoap wrote: post #24
dahinds wrote: post #19

Earlier quoted context omitted.

This is false, we've sold data with PII to no one. Or it is misleading: the page you linked to even says, "It is selling de-identified, aggregate data for research, if you give them consent."

> It is selling de-identified, aggregate data Just a note that re-identifying aggregate data is a whole field of study that is decently successful.

“In principle” but In 20 years do we gave any cautionary tales? i don’t and follow this area somewhat. Homomorphic encryption is pretty hard to crack.

Re: How to Delete Your 23andMe Data

#65

Post by dragonwriter »

echelon wrote: post #43
tptacek wrote: post #40

Earlier quoted context omitted.

Being able to usefully mine this information out of SNPs is science fiction.

There is abundant literature on SNP data disease correlation. Here's an example (fictional preview) report from Promethease, which you can run on your SNP data you download from 23andme: https://files.snpedia.com/reports/promethease_data/genome_Mi... eg. > 1.42x risk of Autism > 1.3x to 11.5x Increased risk of autoimmune thyroid disease > 1.3x higher risk of ER+ breast cancer > 2 - 3x higher prostate cancer risk if r…

None of those are particularly useful on an individual level. E.g.:

- 1.42x risk of Autism

Okay, great, the population incidence is about 1 in 36, so 1.42x risk is about 1 in 25. What possible actionable use is this? It's not even particularly useful input to "should I follow up with some kind of actual assessment".

But even that and the other not-particularly-useful numeric risk multipliers are better than:

- You have a SNP in the oxytocin receptor which may make you less empathetic than other people.

At this level of specificity, you may as well be consulting a magic 8-ball.

Re: How to Delete Your 23andMe Data

#66

Post by robwwilliams »

dahinds wrote: post #41
dekhn wrote: post #25

Earlier quoted context omitted.

Providing another company access to deidentified data is "selling your data", to argue otherwise is just semantics. Note that selling deidentified data (genomic, health, etc) is common in the industry already and 23&Me is hardly unique in this respect.

I would not argue with you on that it is "selling your data". But I also think there are meaningful differences in harm levels for different kinds of "selling your data", and fully identified data has more potential harms than de-identified data where you have to assume that an adversary is willing to violate contracts and/or the law to learn about particular individuals. There is considerable confusion about the dis…

Thank you, thank you. Great comment.

Re: How to Delete Your 23andMe Data

#67

Post by robwwilliams »

lurkersince2013 wrote: post #57
partiallypro wrote: post #55

I know I'm in the vast minority here, but I honestly don't really care what is done with my DNA data as long as it's not used against me for healthcare & insurance purposes (which I believe is already illegal.) If someone wants to use it to make new drugs, research, etc, I just don't care.

Am sure there’s a very real possibility that some shady data brokers will ultimately gain access to the treasure trove of data before long - and am sure that in our capitalistic world healthcare and insurance companies would happily pay for access.

Not to mention it is illegal and not even an illegal money makers.

Re: How to Delete Your 23andMe Data

#68

Post by scottyah »

nickjj wrote: post #58

I never made an account there or uploaded anything DNA related but what happens if a relative did? Is there the concept of a "ghost" account that gets filled in for people who didn't sign up yet but is likely related? Can this be deleted without making an account?

Yeah, they teamed up with the Mormons mapping out the entire human family tree and have been able to predict every possible child DNA sequence in order to eventually create Paul Atreides.

(as for your question, I have no idea)

Re: How to Delete Your 23andMe Data

#69

Post by pavel_lishin »

throwaway48476 wrote: post #10
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.

But it creates legal grounds for lawsuits if they don't.

A lawsuit costs money, and doesn't un-sell the data.

Re: How to Delete Your 23andMe Data

#70

Post by deepsun »

throwaway48476 wrote: post #10
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.

But it creates legal grounds for lawsuits if they don't.

How you lawyer is going to prove the data is not deleted?

And what damages are you going to claim in court.

Lawyers are not cheap, no lawyer will work on a case less that even $1k. My only hope is donating to privacy fighting organizations like EFF that file class actions.

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