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 (10 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 (1 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.

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

What would a landlord do with your genetic information

[–] [email protected] 35 points 1 year ago (1 children)

he'd feed it and a number of other factors into an opaque, completely unaccountable AI that makes rental decisions for him without disclosing the factors that went into the decision and with no appeals process.

Imagine if housing operated like reddit bans.

[–] [email protected] 3 points 1 year ago

So much of the future just looks like fancy new ways to make machines legitimize and carry out our racism for us.

[–] [email protected] 22 points 1 year ago

Off the top of my head

This tenant is predisposed to cancer (or other medical issues), which means an increased likelihood of them getting stuck with massive medical bills and financial hardship so they would have a harder time paying rent on time, better Jack up their rent so I can get my money's worth out of them while I still can or just deny their application altogether

This tenant appears to be part black, Jewish, or some other ethnicity I don't like, better find a reason to jack up their rent or kick them out

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

More likely is a background/credit check service that runs statistical analysis on genetic factors that correlate with late payments or property damage as part of their renter screening service.

[–] [email protected] 8 points 1 year ago (1 children)

Hold my techbro, this smells like a case of VC funded startup!!

"It's not racist bro, it's just a statistical analysis on genetic factors that correlate with late payments or property damage.
It'll be the next big thing, I swear we keep the DNA on our own blockchain, we call it the doublechainix. You get it bro??"

[–] [email protected] 3 points 1 year ago

“And we’ll make a sweet app where we can charge people $20 for access to their own data bro!”

[–] [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 (1 children)

Although I wonder if HIPAA would need to get involved in places like the US if that happens. If that data is used to diagnose, then it falls under HIPAA.

If they do that, there will definitely be giant legal battles. I wonder if that is a legal risk they’d want to take on.

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

HIPAA basically only covers healthcare providers and workers. I ran into this when the VA mailed my entire medical history to some random person. Since it wasn’t the healthcare branch of the VA, I had exactly zero recourse.

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

That's not true. HIPAA covers anyone handling protected health information in a professional manner. If some office clerk at the VA is mailing out copies of HIPAA-protected information, they're bound by HIPAA. If a consulting IT firm has access to a hospital's servers as they're changing something about the EHR, they're bound by HIPAA. Protected information cannot make its way from a "covered entity" to a non-covered entity like a totally unrelated bakery who would not have an obligation to protect your information without either: 1) violating the law, 2) you personally disclosing the information to the non-protected party, or 3) you or someone authorized on your behalf signing a disclosure waiver permitting the covered entity to disclose

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

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

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

The problem is, that the law is not absolute. Neither in it's writing nor it's application.

Large companies regularly break the law (especially data protection) and face very little consequences. Either because they can afford a staff of lawyers to find and build loopholes, or through schmoozing with the right desicion makers. Paying a fine of 20 million is not much when you made 20 billion (20 thousand million) in profit.

Even more so, very large companies (think Facebook or Google) hold enough political power to influence or even change laws.

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

Nothing you just doom and gloom said changes the simple fact (it is in writing) that it's illegal.

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

You are correct. It is illegal.

[–] [email protected] 3 points 1 year ago

Someone never saw Gattaca.

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

I dunno. That's all super expected.

To me the dystopian part is millions of people with no personality needing to send spit to a black box private company so they can get a letter back telling them how special they are.