this post was submitted on 28 Sep 2024
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[–] [email protected] 147 points 2 months ago (2 children)

DNA might contain health information, but unlike a doctor’s office, 23andMe is not bound by the health-privacy law HIPAA. And the company’s privacy policies make clear that in the event of a merger or an acquisition, customer information is a salable asset. 23andMe promises to ask its customers’ permission before using their data for research or targeted advertising, but that doesn’t mean the next boss will do the same. It says so right there in the fine print: The company reserves the right to update its policies at any time. A spokesperson acknowledged to me this week that the company can’t fully guarantee the sanctity of customer data, but said in a statement that “any scenario which impacts our customer's data would need to be carefully considered. We take the privacy and trust of our customers very seriously, and would strive to maintain commitments outlined in our Privacy Statement.”

[–] whostosay 77 points 2 months ago (1 children)

We take it very seriously, just not as seriously as money.

[–] [email protected] 10 points 2 months ago

“I mean, we would have to receive a pretty excellent offer to violate our customers’ privacy—which is super important to us. (We reserve the right to also accept offers ranging from “pretty decent” to “doable,” or in the event of our profits not really getting us hard anymore, we may also accept “any” offer.) Your privacy is very important to us.”

[–] danc4498 14 points 2 months ago

There needs to be government protection of your DNA, but the government probably doesn’t want that

[–] [email protected] 113 points 2 months ago (4 children)

The worst thing is I’ve never consented to them having my DNA but they have half of it anyway thanks to my brother…

[–] negativenull 49 points 2 months ago (1 children)

My identical twin brother who gave it to them...

[–] partial_accumen 19 points 2 months ago (2 children)

That is one of the rare situations where it likely works to your advantage. Any negative thing you do with with your DNA will be pinned on your brother because its his name associated with the DNA you share.

[–] PetteriPano 8 points 2 months ago (1 children)

I thought identical twins usually had like a dozen of so diffing mutations by the time they reach adulthood.

I'm not familiar with 23andme enough to know if their markers would pick up on it.

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[–] [email protected] 43 points 2 months ago (2 children)

They have 98% of it thanks to those damn dirty apes

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[–] [email protected] 52 points 2 months ago (1 children)

stops mid stroke wait, those things are for saliva?

[–] SlopppyEngineer 29 points 2 months ago (1 children)

Yes. The other liquid only has half the DNA and they don't do half price.

[–] bhamlin 14 points 2 months ago

That's why I've been sending two at a time.

[–] Boozilla 42 points 2 months ago

23 Data Miners and Me.

[–] FlyingSquid 41 points 2 months ago (5 children)

I remember I didn't and thank fucking god, because this would have been me:

https://www.nbcbayarea.com/news/tech/23andme-user-data-stolen-shkenazi-jewish-users/3336464/

Still waiting for the fallout from that. It won't be pretty.

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[–] LordCrom 38 points 2 months ago* (last edited 2 months ago) (3 children)

HA ! Sweet vindication! I've been preaching to friends and family not to use these DNA companies for this and other reasons. They called me a loon and I should get my tin foil hat. I cant wait to see their faces

[–] BillMurray 36 points 2 months ago (1 children)

5 spaces after punctuations seems excessive .

[–] lemmy_get_my_coat 25 points 2 months ago

That's why their friends call them a long

[–] Fredselfish 10 points 2 months ago (1 children)

Tried to read article but it fades out and can't resd whole thing. Anyone got the article I can read?

[–] [email protected] 42 points 2 months ago (2 children)

23andMe is not doing well. Its stock is on the verge of being delisted. It shut down its in-house drug-development unit last month, only the latest in several rounds of layoffs. Last week, the entire board of directors quit, save for Anne Wojcicki, a co-founder and the company’s CEO. Amid this downward spiral, Wojcicki has said she’ll consider selling 23andMe—which means the DNA of 23andMe’s 15 million customers would be up for sale, too.

23andMe’s trove of genetic data might be its most valuable asset. For about two decades now, since human-genome analysis became quick and common, the A’s, C’s, G’s, and T’s of DNA have allowed long-lost relatives to connect, revealed family secrets, and helped police catch serial killers. Some people’s genomes contain clues to what’s making them sick, or even, occasionally, how their disease should be treated. For most of us, though, consumer tests don’t have much to offer beyond a snapshot of our ancestors’ roots and confirmation of the traits we already know about. (Yes, 23andMe, my eyes are blue.) 23andMe is floundering in part because it hasn’t managed to prove the value of collecting all that sensitive, personal information. And potential buyers may have very different ideas about how to use the company’s DNA data to raise the company’s bottom line. This should concern anyone who has used the service.

DNA might contain health information, but unlike a doctor’s office, 23andMe is not bound by the health-privacy law HIPAA. And the company’s privacy policies make clear that in the event of a merger or an acquisition, customer information is a salable asset. 23andMe promises to ask its customers’ permission before using their data for research or targeted advertising, but that doesn’t mean the next boss will do the same. It says so right there in the fine print: The company reserves the right to update its policies at any time. A spokesperson acknowledged to me this week that the company can’t fully guarantee the sanctity of customer data, but said in a statement that “any scenario which impacts our customer's data would need to be carefully considered. We take the privacy and trust of our customers very seriously, and would strive to maintain commitments outlined in our Privacy Statement.”

Certain parties might take an obvious interest in the secrets of Americans’ genomes. Insurers, for example, would probably like to know about any genetic predispositions that might make you more expensive to them. In the United States, a 2008 law called the Genetic Information Nondiscrimination Act protects against discrimination by employers and health insurers on the basis of genetic data, but gaps in it exempt providers of life, disability, and long-term-care insurance from such restrictions. That means that if you have, say, a genetic marker that can be correlated with a heart condition, a life insurer could find that out and legally deny you a policy—even if you never actually develop that condition. Law-enforcement agencies rely on DNA data to solve many difficult cases, and although 23andMe says it requires a warrant to share data, some other companies have granted broad access to police. You don’t have to commit a crime to be affected: Because we share large chunks of our genome with relatives, your DNA could be used to implicate a close family member or even a third cousin whom you’ve never met. Information about your ethnicity can also be sensitive, and that’s encoded in your genome, too. That’s all part of why, in 2020, the U.S. military advised its personnel against using consumer tests.

Read: Big Pharma would like your DNA

Spelling out all the potential consequences of an unknown party accessing your DNA is impossible, because scientists’ understanding of the genome is still evolving. Imagine drugmakers trolling your genome to find out what ailments you’re at risk for and then targeting you with ads for drugs to treat them. “There’s a lot of ways that this data might be misused or used in a way that the consumers couldn’t anticipate when they first bought 23andMe,” Suzanne Bernstein, counsel at the Electronic Privacy Information Center, told me. And unlike a password that can be changed after it leaks, once your DNA is out in the wild, it’s out there for good.

Some states, such as California, give consumers additional genetic-privacy rights and might allow DNA data to be deleted ahead of a sale. The 23andMe spokesperson told me that “customers have the ability to download their data and delete their personal accounts.” Companies are also required to notify customers of any changes to terms of service and give them a chance to opt out, though typically such changes take effect automatically after a certain amount of time, whether or not you’ve read through the fine print.

Consumers have assumed this risk without getting much in return. When the first draft of the human genome was unveiled, it was billed as a panacea, hiding within its code secrets that would help each and every one of us unlock a personalized health plan. But most diseases, it turns out, can't be pinned on a single gene. And most people have a boring genome, free of red-flag mutations, which means DNA data just aren’t that useful to them—at least not in this form. And if a DNA test reveals elevated risk for a more common health condition, such as diabetes and heart disease, you probably already know the interventions: eating well, exercising often, getting a solid eight hours of sleep. (To an insurer, though, even a modicum of risk might make someone an unattractive candidate for coverage.) That’s likely a big part of why 23andMe’s sales have slipped. There are only so many people who want to know about their Swedish ancestry, and that, it turns out, is consumer DNA testing’s biggest sell.

Read: DNA tests are uncovering the true prevalence of incest

Wojcicki has pulled 23andMe back from the brink before, after the Food and Drug Administration ordered the company to stop selling its health tests in 2013 until they could be proved safe and effective. In recent months, Wojcicki has explored a variety of options to save the company, including splitting it to separate the cash-burning drug business from the consumer side. Wojcicki has still expressed interest in trying to take the company private herself, but the board rejected her initial offer. 23andMe has until November 4 to raise its shares to at least $1, or be delisted. As that date approaches, a sale looks more and more likely—whether to Wojcicki or someone else.

The risk of DNA data being misused has existed since DNA tests first became available. When customers opt in to participate in drug-development research, third parties already get access to their de-identified DNA data, which can in some cases be linked back to people’s identities after all. Plus, 23andMe has failed to protect its customers’ information in the past—it just agreed to pay $30 million to settle a lawsuit resulting from an October 2023 data breach. But for nearly two decades, the company had an incentive to keep its customers’ data private: 23andMe is a consumer-facing business, and to sell kits, it also needed to win trust. Whoever buys the company’s data may not operate under the same constraints.

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[–] ThePowerOfGeek 37 points 2 months ago (1 children)

I'm so glad I never sent them my DNA. It was tempting from a genealogy perspective. But my concerns about privacy and them selling on customer information always weighed heavier than that temptation.

But I feel a lot of sympathy for those who used their services. For a while they incessantly advertised them, including via paid endorsements from many 'trusted' podcasters and YouTubers. The company's failure should bring to the fore a drive for new laws in many countries to protect consumers' DNA from being monetized and exploited. But sadly we all know it won't.

[–] Podunk 27 points 2 months ago (2 children)

So the fun thing about genetics is... if you said no, but they conned enough of your family, they got a good part of your genome anyhow.

In my case, Mom was somewhat interested about it when it came out. Dad too. And i told them no to, because, well one, sharing data bad. But also, this buisiness is a one off. There are no repeat customers and it was destined to be sold to the highest bidder.

For once, my parents listened. But good god. This company has already been mined by police to use genetic info from relatives to convict their family members. https://www.nytimes.com/2021/12/27/magazine/dna-test-crime-identification-genome.html

Murder convictions and serial rapists going to jail, i got no problem with, but that slippery slope exists. And from years of experience, im not inclined to give the authorities my data, even by proxy. The abuse potential is immense and history is not on the average citizens side.

[–] robocall 9 points 2 months ago

multiple family members of mine bought 23andme kits, so the company has my data as well. even though I wanted nothing to do with them.

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[–] [email protected] 28 points 2 months ago (2 children)

Remember That DNA You Gave 23andMe?

No. When did I do that?

[–] [email protected] 8 points 2 months ago

Ah, by not sending them money every month you agreed to them coming into your room while you slept to harvest your unique juices.

Should have known to opt out of that thing you never signed.

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[–] [email protected] 26 points 2 months ago (11 children)

I’m still glad I did.

Lead me to finding my biological family.

And as far as side effects go, there’s not much they can use it for that will bother me.

[–] Cryophilia 47 points 2 months ago (25 children)

This whole "meh I don't care about privacy, take my data" attitude among younger generations is going to cause us SO MANY PROBLEMS in 20 years.

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[–] reddig33 22 points 2 months ago (3 children)

23andMe has a “request data deletion” feature. I don’t know if it actually works, but it’s worth a try if you’re worried about it.

[–] slickgoat 17 points 2 months ago

Yep, I had my data deleted. They told me so, but I don't for a second believe it.

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[–] [email protected] 22 points 2 months ago

People are morons for doing these things and expecting any privacy.

[–] [email protected] 21 points 2 months ago (3 children)

I had my sample destroyed the day they went public.

[–] Crackhappy 67 points 2 months ago
[–] [email protected] 26 points 2 months ago

They seem trustworthy. /s

[–] [email protected] 13 points 2 months ago

Lol, sure you did.

[–] [email protected] 18 points 2 months ago

i was really close to using this service.

then they got hacked. so i waited.

now this makes me glad that i waited.

[–] [email protected] 18 points 2 months ago (2 children)

Nope. I wasn’t that fucking stupid. So…. Not me.

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[–] A_Random_Idiot 14 points 2 months ago (1 children)

Anyone who used these DNA analysis services were idiots to begin with.

There was no way in hell that valuable genetic data would ever stay private with no commercial or police access.

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[–] EleventhHour 13 points 2 months ago

I was never so fucking stupid as to give my DNA to them.

[–] [email protected] 11 points 2 months ago (1 children)
[–] [email protected] 29 points 2 months ago (1 children)

But you can’t control what your family does.

[–] piecat 23 points 2 months ago (5 children)

Honestly terrifying. Once that info is out there, who knows what could happen.

Will insurance use it to see if you're pre-disposed to something and charge more?

Will a fascist group use it to find groups they think are undesirable? What if there's a genetic component or predisposition to being gay/trans?

Will future terrorists or governments use it to engineer a virus that only affects a group of people? Assasinate an enemy and their entire family?

[–] [email protected] 7 points 2 months ago (2 children)

There's a podcast sequel to Orphan Black that uses the plot from your last point, and it is excellent

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