https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act

"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.

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

We need a lot of things.

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

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.

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.

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.

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

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

Me 10 years ago, apparently.

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.

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

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

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?