this post was submitted on 01 Nov 2023
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Drugmakers Are Set to Pay 23andMe Millions to Access Consumer DNA::GSK will pay the DNA testing company $20 million for non-exclusive access to genetic data.

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[–] [email protected] 210 points 1 year ago (12 children)

The real dystopian horror is when these genetics companies start selling to insurance companies. Think about it:

"I'm sorry we aren't covering this cancer claim with our health insurance product because you are genetically predisposed to it"

We need legislation now to prevent genetic discrimination.

[–] [email protected] 70 points 1 year ago (1 children)
[–] [email protected] 66 points 1 year ago (7 children)

I remember when this legislation was being drafted. I didn't realize it had passed!

IMO its still too narrow. There's nothing in the law I saw that prevents a landlord from using genetic information or car insurance, etc.

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[–] [email protected] 40 points 1 year ago* (last edited 1 year ago)

"I'm sorry we aren't covering this cancer claim with our health insurance product because you are genetically predisposed to it"

You almost got this right...

It's more like, your mother submitted DNA and she's predisposed, so YOU get denied. And that will go back a few generations.

And when it's something like a 2nd cousin submits DNA and is predisposed, they won't deny you specifically, but they'll raise your rates without letting you know why.

[–] [email protected] 24 points 1 year ago* (last edited 1 year ago) (1 children)

For more information please refer to the 1997 documentary 'Gattaca'

[–] [email protected] 9 points 1 year ago

Society is really doing its darndest to turn all the dystopian cyberpunk worlds into reality huh

[–] [email protected] 20 points 1 year ago

We need a lot of things.

Spoiler: We're not getting them because too many politicians are bought and paid for.

[–] [email protected] 10 points 1 year ago

We do have legislation to protect genetic information, what we need is to prevent the gathering and distribution of this information in the first place because those laws go away the second someone is positioned to make a shit ton of money from it.

[–] [email protected] 7 points 1 year ago

in fact regulation IS the way to prevent this kind of discrimination, otherwise these companies can just start demanding genetic tests to rule out predisposition, regardless of the previous existence of a database with this data or their access to it.

[–] [email protected] 4 points 1 year ago (3 children)

Laws against that have already been passed. No one's allowed to do it.

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[–] [email protected] 78 points 1 year ago (2 children)

It’s almost like we all saw this coming when these services started taking off. I’ll never put myself into one, and at least from my best knowledge none of my close family has either

[–] [email protected] 11 points 1 year ago

Or maybe we saw it a decade or more ago when Wojcicki literally said this is what she was going to do with everyone's data? This company had and greed and suspicious practices tattooed to it's forehead since inception.

https://www.forbes.com/sites/matthewherper/2013/06/13/expect-to-see-23andme-ads-as-the-company-tries-to-take-genetic-tests-mainstream/?sh=63184772673d

[–] [email protected] 7 points 1 year ago (3 children)

Well if it helps accelerate the development of life saving medications I suppose it's the least offensive use of that data.

Much preferred over say insurance companies using it or hostile governments lmao

[–] [email protected] 32 points 1 year ago (3 children)

if it helps accelerate the development of life saving medications

LMAO

Goldman Sachs: "Is curing patients a sustainable business model?"

Not if Wall Street has anything to do with it!

[–] [email protected] 9 points 1 year ago

We may and should point to all questionably bad practices of these drug companies, but I think humanity is still far better off with their research advancements than without them. So I'm all for using my data for that purpose like 23andMe is doing. Now insurance companies and lobbyists - these can go to hell.

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[–] [email protected] 5 points 1 year ago

That's definitely what this is all about. I know because I heard this in an ad for 23&me

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[–] [email protected] 36 points 1 year ago (1 children)

Who knew giving away YOUR FUCKING DNA to some company was not a good idea

[–] [email protected] 21 points 1 year ago (3 children)

Me 10 years ago, apparently.

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[–] [email protected] 26 points 1 year ago (1 children)

Weren't they hacked recently? Are the drugmakers sure the data isn't cheaper on the black market?

[–] [email protected] 15 points 1 year ago* (last edited 1 year ago)

They're why they're only paying "millions". To big pharma, $20m is just pocket change. Now no one will accuse them of downloading it off the dark net.

[–] [email protected] 19 points 1 year ago

Are set to ? I thought it was their business model.

[–] [email protected] 17 points 1 year ago (1 children)

People paid 23andMe to give them the data in the first place. Should be illegal to profit off of other people's data if they're not getting paid for it.

[–] [email protected] 5 points 1 year ago (1 children)

customers are asked if they wish to share their data for research

[–] [email protected] 5 points 1 year ago (1 children)

customers are asked if they wish to ~~share their data for research~~ allow their data being sold to 3rd parties

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[–] [email protected] 16 points 1 year ago

Not the onion. Wow.

[–] [email protected] 15 points 1 year ago

fucking scary AF

[–] [email protected] 14 points 1 year ago (9 children)
[–] [email protected] 24 points 1 year ago (1 children)

did you not read the terms and conditions before you agreed to them

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[–] [email protected] 10 points 1 year ago (1 children)

Customers are only to blame for sharing giving such data to business that only exist to make money. I have never used these services for the same reason and I will never use them. I don't trust what they will do with this data if not now, then down the line.

[–] [email protected] 18 points 1 year ago

I understand your sentiment, and I do agree that costumers gotta be more aware about what they're getting into.

With that said, consumers can't be blamed for legislative failures. That's what this is, at its core.

When people signed up to Facebook, they just wanted to keep in touch with their friends. When people signed up for Instagram, they just wanted to share pictures. They didn't want to be endlessly exploited.

And let's be real, no one is sifting through these privacy policies and ToS that are designed to be impossible to understand.

Same thing here. People just wanna understand their genealogy. Wanting to know your ancestry, shouldn't come at the expense of incredibly privacy-invading practices.

Why is it that we as consumers need to share to these horrendous business practices if we wanna know our ancestry? Why are there no protections in place? Is it realistic/reasonable to have to read all this incomprehensible language?

[–] [email protected] 9 points 1 year ago

In the future, you have to subscribe to use your specific genes. No choice in the matter because you were born with them, but big pharma owns the rights to those same genes.

[–] [email protected] 7 points 1 year ago (5 children)

Shocking, company not caring about their customers.

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[–] [email protected] 6 points 1 year ago

I'm always so glad to never have used that service.

[–] [email protected] 5 points 1 year ago
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