It was clear from the beginning that 23 and me wasnt selling these far below cost out of the goodness of their heart. They were going to use it to profit one way or the other. The question was how not if.
this post was submitted on 10 Nov 2023
387 points (94.9% liked)
Technology
59135 readers
2878 users here now
This is a most excellent place for technology news and articles.
Our Rules
- Follow the lemmy.world rules.
- Only tech related content.
- Be excellent to each another!
- Mod approved content bots can post up to 10 articles per day.
- Threads asking for personal tech support may be deleted.
- Politics threads may be removed.
- No memes allowed as posts, OK to post as comments.
- Only approved bots from the list below, to ask if your bot can be added please contact us.
- Check for duplicates before posting, duplicates may be removed
Approved Bots
founded 1 year ago
MODERATORS
With NIH and FDA oversight and HIPPA compliance right?
Right?
23 and me isn't a healthcare provider and not a "covered entity" under HIPAA . So the protections that would apply if you got genetic testing through your doctor from an actual medical genetic testing company don't actually apply to 23 and me. Though the company maintains it follows federal regulations voluntarily "as a courtesy."
So don't worry, your genetic data is protected by the good will of venture capital tech bros.
Any unregulated entity that swears they're doing the right thing is straight up lying
Yeah 23 and me wanted to have their cake and eat it too. They wanted to run tests for genetic diseases but not have to comply with any of the regulations that would entail, including critical things like HIPAA, offering proper informed consent before testing (which is not just a form but is an actual conversation with a medical professional), and offering up included follow-up genetic counseling services for individuals and their families. This is critical for genetic testing especially, which usually have results that are far more complicated than just a simple negative or positive. Basically just the airbnb or uber models of skirting regulations for profit but applied to genetic testing. FDA stopped them though, so instead of complying with regulations there for good reason they cut out the actual medical tests and now just compile things like, your risk of heart disease may be ~4% instead of ~3% because of this SNP marker we found. All so that the FDA and others can't regulate them like true medical testing companies.
The CEO just really likes the taste (and especially the structure) of spit.
I can't unread this. Good job sir.
load more comments
(2 replies)
I'm pretty sure they were upfront about their intended use to help research personalized medication. This isn't some conspiracy.
load more comments
(3 replies)
Wow! It's something nobody could have ever guessed!
Yeah this doesn't bother me. And I tend to be a somewhat paranoid person. But I got convinced to do one of these by my partner. And so far, no regrets. They had some family surprises, but they don't regret it either. If they make some cool new meds with my DNA (honestly even if I have only the knowledge that they made meds from 23andme) I'm just going to go around saying hey that might have my DNA in it.
Just wait until you guys find out what they're really doing is cloning us all to replace us with mindless worker drones. I accidentally met mine. They were nice. Bought me a coffee. Then I got real sleepy and woke up half buried in the woods. Real strange day.
Yeah I saw when that happened. I don't do the open sharing. But it is easy to identify me as a Jew plenty of other ways. Including online with things attached to my real name. So it is what it is.
If problems arise, you can always ditch your name but not your DNA. Obviously, those are worst case scenarios but I'm personally worried about DNA being used by insurance companies, being coupled to credit scores, used for higher education admittance, etc
load more comments
(1 replies)
This isn't even new. Why are we posting things from over two years ago and treating it like some sort of revelation?
kinda inevitable. with as fast as dna can be sequenced now.. we are publicly broadcasting this information. how can we realistically protect something we broadcast. its kinda like having your photo taken in public. at some point, its gunna happen.
do you have an expectation of privacy on data you publicly broadcast 24/7 everywhere all the time? i dont think so. i think its silly to try.
its only a matter a time before most of the world is captured into a continually aggregated genetic database of unique individuals which will inevitably all link back together.
are there going to be bad actors? yep. lets prosecute those mofos, but this kind of aggregations is far from evil or wrong or.. stoppable.
load more comments
(2 replies)
Everyone who thinks this is legitimately bad. I ask, what do you think of AI art data sets? Sometimes, to make something new you have to have mass amount of data to start with.
I think people who paid to have a service, checked a box for their sample to be used for research, and the research is to cure disease, have significantly lower reason to be upset than an artist who used Twitter to upload their work and had said work used as a data set to train a product that will try to make their career even MORE financially immposible.
Boohoo. You signed up for a good cause. Get over it.
Here's the difference, an artist can make more art. You cannot change your DNA. If someone steals some of your art it's not the end of the world. You can make more. If someone has your DNA, you can't change it. Once its out there that's it. More over having someone's DNA can give you significant insight into into just the person whose DNA you have but also their parents and their children.
Once its out there that’s it.
But the subject put it out themslevss. More over, they paid for it be used. No one was tricked, captured or coerced in to giving their DNA.
As opposed to an artist who is promoting themselves and their craft, used without their knowledge to replicate their work.
By biological father was an anonymous sperm donor before the technology to sequence a person's DNA for under 10 billion dollars was a thing. They did not give their DNA to ancestry. Their sister did, having no clue that her brother had donated. Yet ancestry has matched her to several nieces and nephews, outing her brother's history to his sister and the children who were never supposed to have access to that info. It's not just your own information.
Similarly, one of my half siblings suddenly found out that his dad wasn't his birth dad.
Anyways, he happens to be cool with the fact that he suddenly had contact with offspring who weren't supposed to know who he was.
But our DNA is interconnected. It doesn't just belong to one person.
load more comments
(3 replies)
I mostly agree, except both my parents did it so they more or less have my DNA without my consent. They sure might not have the exact combination that I received from them but it’s more than I’m comfortable with.
load more comments
(2 replies)
load more comments
(2 replies)
There’s a big difference between a person’s DNA and a person’s art. DNA is the principle part of someone’s biometric identity, which can be used to reveal an enormous amount of information about a person. Hence it is not unreasonable to expect that its usage will be handled in a careful and clearly defined manner. Most countries have very strict laws on biometric data for a reason.
The same can not be said for a piece of art. While an an artwork will often convey aspects of the artist’s personality, and can conform to an identifiable style, it would provide no where near the level of insight into a persons physical identity as a DNA sample.
It also seems a stretch to conflate sharing something privately and publishing something publicly. The former will have expectations of privacy and control, regardless of whatever is stated any legalese incomprehensible to the average person. The latter however assumes a loss of control, to share something publicly is in some ways to cede it to the public.
load more comments
(1 replies)
Seems icky to me.
I donated my DNA to a research project. I have Crohn's disease and type 1 diabetes. I'm likely autoimmune prone.
I get updates about what it's used for. Usually trying to identify causes for autoimmune diseases. It feels good to help out the people fighting disease.
But that's sort of the point. You donated it knowing it was going to research. People using 23andme did not. And they will not be getting updates on the research either.
They were very clear it was for research in my memory. That was the reason I did it.
No, the project there referring to is run by 23andme. My whole family participates in the same research because so many of us have Crohn's disease.
load more comments
(1 replies)
I never understood the appeal of the business in the first place. Why would you care who your great great great grandpa was? I don't even care who my Grandpa was.
Why would you care who your great great great grandpa was?
I was able to find out that my great grandfather was adopted, and meet a whole new wing of my family. I didn't even do the test, my aunt did.
About 10 years ago they provided medical data from the samples. I used 23 And Me too confirm that a health problem I'd recently been diagnosed with was hereditary. At the time I remember being asked if my sample could be used to aid the type of research the OP talks about and I agreed to it.
A couple of years ago, I think 23 And Me was bought out by Virgin Healthcare, at that point I asked them to destroy all my data was worried about it being used to increase the cost of or preclude health insurance.
load more comments
(3 replies)
surprisedpikachuface
I bought a pair of them. The lady and I thought it over for years and finally ended up shit-canning them. It just didn't feel right.
No shit sherlock
Ok, they are using your data to drive pharma development. Does it really matter which pharma company gets rich. If it leads to improvement i. medicine it is a net gain for humanity.
What's funny to me about these DNA testing companies, isn't the obvious data collection ploy, but the customers who feel compelled to buy the service. So the fuck what you're 13% Cherokee and 27% Dutch and 5% Eastern African? Try developing a personality or interests.
originally it was sold as a way to quickly detect genetic diseases before they became a problem.
Try developing a personality or interests.
says the guy criticizing strangers on the internet.
load more comments
(1 replies)
Seriously how dare people want to learn about their ancestors and where they came from? Obviously that means they have no personality!
load more comments
(2 replies)
view more: next ›