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How to Delete Your 23andMe Data

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Re: How to Delete Your 23andMe Data

#51

Post by Swizec »

progmetaldev wrote: post #44
echelon wrote: post #36

Earlier quoted context omitted.

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…

I'm not sure if there are any current laws that prevent this, but there are quite a few laws that would prevent an advertising company from getting this information. Like most things, if we're going by a company that doesn't work within the law, we're already going to lose. What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for th…

> What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time).

HIPAA works because it comes with personal liability. Anyone who sells/leaks/loses HIPAA data gets hit with a $1000 or so fine per person. So if you sell 100 patients' data, you're personally on the hook for $100,000. Your employer pays another cool $10,000/person on top.

More of these laws should come with personal liability. HIPAA is the only one I've ever seen people take seriously.

Re: How to Delete Your 23andMe Data

#53

Post by robwwilliams »

a2dam wrote: post #32
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Enough to be denied insurance, have job offers rescinded, or be targeted by scams.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.

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.

To the best of my knowledge use of genetic data is illegal in the USA and several other countries. It has been operational banned (self-imposed) by the life insurance industries in the UK and Australia. This was a hit topic in the late 1990s. Here we are 25 years later with few if any known abuses by the life insurance industry. They have MUCH bigger fish to fry: Do you smoke? What is your income, age, and sex, and perhaps your blood pressure and blood chemistry. Each of those is worth 10X your genotype.

(I study actuarial genetics in the UM-HET3 mice and do quite a bit of human genetics related to aging. See this PMID: https://pubmed.ncbi.nlm.nih.gov/36173858/ )

Re: How to Delete Your 23andMe Data

#54

Post by robwwilliams »

progmetaldev wrote: post #48
echoangle wrote: post #30

Earlier quoted context omitted.

> have job offers rescinded, or be targeted by scams Can you expand on this? I understand the insurance thing due to genetic diseases and so on, but which jobs would I be denied for based on genetic information which wouldn’t be checked anyways? I can only come up with stuff like colorblindness but that would probably be checked anyways if it were a strict requirement for the job so keeping the DNA secret wouldn’t he…

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.

Re: How to Delete Your 23andMe Data

#55

Post by partiallypro »

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.

Re: How to Delete Your 23andMe Data

#56

Post by robwwilliams »

echelon wrote: post #34
echoangle wrote: post #30

Earlier quoted context omitted.

> have job offers rescinded, or be targeted by scams Can you expand on this? I understand the insurance thing due to genetic diseases and so on, but which jobs would I be denied for based on genetic information which wouldn’t be checked anyways? I can only come up with stuff like colorblindness but that would probably be checked anyways if it were a strict requirement for the job so keeping the DNA secret wouldn’t he…

This would be wholly illegal, but companies could screen candidates prior to extending offers to them. After they get your primary details and history, they can look you up in the gene database. They could look for a whole host of genetic markers, including but not limited to: - Markers like ADHD and other neurodivergence and performance signals - Disease likelihoods to reduce their insurance burden. Cardiovascular,…

A 15 min interview will give them 100X more data than a VCF file or even a 30X whole genome. The list of traits you enumerated are definitely not well predicted by a VCF file.

Re: How to Delete Your 23andMe Data

#57

Post by lurkersince2013 »

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.

Re: How to Delete Your 23andMe Data

#58

Post by nickjj »

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?

Re: How to Delete Your 23andMe Data

#59

Post by robwwilliams »

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…

Yes, those are tiny relative risk scores for large diverse (messy) POPULATIONS. They are absolutely NOT individual predictions. Even the most sophisticated polygenic risk score are jokes for most traits—-particularly psychosocial traits.

You want actionable information— a 30 minute interview.

Re: How to Delete Your 23andMe Data

#60

Post by windsignaling »

Is anyone having trouble downloading their data? Some data, such as "Raw Data", "Imputed Genotype Data R6", and "Phased Genotype Data" need to be requested, but I haven't heard back from them yet.

Would like to download everything first before requesting deletion.

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