This is a most excellent place for technology news and articles.
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.
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.
"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.
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.
Laws against that have already been passed. No one's allowed to do 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.
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.
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
Someone never saw Gattaca.
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
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
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!
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.
If you can keep someone from dying by being dependent on only your medication, you've created a customer for life rather than one who died and didn't give you all their money to live another day.
Who knew giving away YOUR FUCKING DNA to some company was not a good idea
Weren't they hacked recently? Are the drugmakers sure the data isn't cheaper on the black market?
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.
Are set to ? I thought it was their business model.
Not the onion. Wow.
How is this legal?
did you not read the terms and conditions before you agreed to them
No
The data is annonimized.
That somehow makes sense. But still, shouldn't you be able to own "the copyright" for your own DNA? If not there should be some legislation for that I think.
No way man, you're not a corporation so you don't get to own anything.
I'm sure you agree to pass any "rights" to your DNA when you sign the T&C.
I believe 23 and me stated in the past that they own the data that they process, so in essence if you, or a family member submit their DNA to them, then they own that DNA and part of the DNA of the relatives of whom submitted the sample.
They don't own the DNA itself, but they do own the rights to the resulting sequence. It's akin to a biography--you don't own the person's life, but the author put it down on paper and owns the rights to the book.
Multiple companies sequencing the same DNA don't end up in copyright spats because the DNA itself isn't copyrightable.
fucking scary AF
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.
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.
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.
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?
I'm always so glad to never have used that service.
I figured one of two things, if not both, would certainly happen with these services. 1. They were going to figure out a way to monetize the information received and/or 2. All the information would be leaked or hijacked. As soon as these services started popping up I told everyone in my family not to trust them. So far, none of us have fallen for the scam. That I am aware of.
23andMe will provide GSK with one year of access to anonymized DNA data from the approximately 80% of gene-testing customers who have agreed to share their information for research
I see no problem with that. Idk what's newsworthy here tbh.
The problem is that just because you are ok with sharing your data (even if you don't understand the potential consequences), your close family and any decendants aren't able to consent or not consent to their shared genetic data being given to these corporations.
How would you feel about your children being unable to get insurance coverage because a close relative used the service and the insurance company decided they were at too high risk for expensive medical problems due to similarity of genes?
How would you feel about your children being unable to get insurance coverage
Just pissed off at the insurers, as usual. But seeing it as a data privacy issue misdirects from the actual problem, which is the genetic discrimination and lack of proper regulation (if that would to ever happen). We don't need to go to hypothetical scenarios of insurance companies scavenging for genetic data - they could simply start demanding genetic tests upon sign-up, which would void the whole "data leak through relatives" discussion and give them a reliable and legitimate dataset.
