It’s absolutely abusive that in order to get your genetic background you have to be willing for the government to have your DNA.
this post was submitted on 19 Nov 2023
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It's not even gouvernement, it's other companies. One day some insurance company will decide to pull out your protections because, turns out, you have X% chances to get a cancer by your 40. Then all other insurance companies do the same. Then, one of them accepts you, but you gotta pay N% more for the same coverage
That’s the fear. Government was just used as hyperbole to make a point.
No. Every DNA collecting agent in the U.S. easily shares it's data base.
I've been wondering this myself. I don't really agree with the other comments saying it's impossible.
We do genetic testing on the medical side and that data is kept private. I don't see why a company couldn't offer similar stuff, paid privately, for a more comprehensive suite of tests. You could learn about your risk factors and keep the data private.
On the history/ancestry side, it could pick out known biomarkers to trace back from publicly accessible data. You wouldn't be able to track down exact family trees, but I don't think that was the intent since you're looking for privacy. Instead you might get stuff like "you're 40% Greek, 20% North African"
Such a company would
- collect a sample
- compare the data against literature
- delete the data
It could also allow customers to opt in for more detailed analysis (for those that don't care for privacy) and let them know about the risks. Or it could give an option to share anonymized health data for researchers investigating diseases / risk factors
Edit: see the comment by Emperor@feddit.uk
For the record, ancestry dna is basically a scam. Especially when they give you a percentage score.
Ask yourself what is French. Or English. How much interbreeding has happened across the spectrum? It can’t tell you who you are- there is no genetic encoding for culture.
This makes sense, I don't really know how they come up with those numbers. I feel like there is a realistic risk for harm if we DID try to classify it (ex. If you have X gene, you are Y race). It wouldn't make any sense to begin with, and it would enable arbitrary persecution
I'm more familiar with the inverse, where doctors can provide better care by screening for risks and generic markers that are more common for a particular demographic. That actually helps humanity and is worth studying more
I don't really know how they come up with these numbers
They sample multiple people from a given region of the world and then look at possible genetic similarities between most individuals in that sample.
Then, they collect your genetic data and "match" to all the different signatures they've collected from different regions, and compute a similarity score.
In theory, if they had sufficient samples and the genes were very characteristic, this could work. In practice, any geneticist will be able to point out multiple flaws with this methodology.
There are indeed certain traits that only occur in specific populations... And while someone else totally unrelated could randomly have a similar mutation, it'd be unlikely. But those are rare, and absolutely not something that can be used to say "78% German"
Yeah I’ve always thought when they give those stats “how long ago?”. Where people’s ancestors lived could be quite different during different time periods, that I don’t think can be accurately represented by percentages.
particularly considering the way they establish them is by comparing you to modern genetics in those groups, and maybe a census of how they identified in the mailer. But our genetic pool is as clear as mud; there's a lot of mixing going on between groups;
Nope. And everyone knew what 23 and Me was doing and did it anyway.
Is there a reason one can't exist? Like laws that prevent them from doing so?
There's a lot of good that can come from genetic screening (ex. medical care), it would be a shame if we'd lose all that because of a dumb law
Not to my knowledge. It's absolutely pathetic and honestly kinda psychotic that you're not allowed to understand your own genealogy and medical history without giving up pretty much everything about yourself. Forever.
Because unlike a compromised password, you can't just hop on the computer and change your genes (yet??).
Boils down to a legislative failure.
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When I was in like 5th grade we took a class trip to a police station.
Once we got there the cops said if we were "good" he'd let us do fingerprints at the end. I was excited till I found out we didn't get to keep the cards, the cops did and they said it was in case we get kidnapped they can find us... When a minute ago it was just a reward for being good.
So I said I didn't want to and the cop and teacher got super pushy and it turned into this whole big thing once parents found out every kid from my school for a couple years got tricked into giving cops their fingerprints.
I was just mad I didn't get to keep the card, they should've just had me do two and kept one.
I presume you are doing this for medical information rather than genealogy as they'd need to keep your information for it to be that useful to you.
If not, check out Family Tree DNA's privacy policy as they seem pretty good with letting you set the level of sharing that you are comfortable with. They don't share with third parties and you can adjust your sharing settings so law enforcement can use you for matching.
I've tested myself and a number of family members with them and am happy with the level of control they give but your mileage may differ.
Isn’t Family Tree the one that was first exposed for allowing LEOs access without a warrant?
I'm not sure of the timeline now but I seem to recall that this first came up through GEDmatch (which doesn't do testing itself but allows people to upload results from different companies to compare them) and law enforcement had been creating data in compatible formats based on samples from cold cases. It hit the news because it helped identify the Golden State Killer. This got users nervous and they switched to you having to opt in allow that kind of matching.
FTDNA changed it ToS to allow law enforcement to use their database for rather vaguely defined crimes but that collided with laws (especially in the EU) and privacy groups, hence the large range of options available. In the EU you have to specifically opt in to allow those kind of matches,. elsewhere you have to opt out (which seems a bit confusing to me - it should be a blanket opt in).
You’re right, it was GEDmatch. I hope they got the right guy for the Golden State Killer and not just some dementia-ridden senior citizen that they could pin it on.
And I completely agree that any use should require positive action to authorize. No company should be able to assume consent just because they haven’t been explicitly told “No.”
Especially as FTDNA, for example, have a large array of settings, which, on one hand, is good for privacy but on the other could make it easy to miss.
I hope they got the right guy for the Golden State Killer and not just some dementia-ridden senior citizen that they could pin it on.
The genealogical genetic tests only let you find a pool of suspects (in this case no more than two dozen men), they'd then be able to a 100% match through standard means. He admitted guilt and pleaded guilty to a number of other crimes that weren't explicitly linked to him. The only real concern I have about that is whether the police used the threat of the death penalty to get him to help clear a backlog of cold cases that he wasn't responsible for.
Is there any benefit for those kinds of services. Other than just for fun, I don't see any reason for it.
Having access to diseases that run in your family when you are adopted is a great benefit of it, and doing that at a private lab is way more expensive. And the one my sister did connected her with family members who were interested in being contacted. It's not that there is a lack of benefit to the service, it's that the services aren't worth the privacy intrusion.
Recently I listened to a Crime Junkie episode where they recommended you send your DNA in for genetic genealogy so that if a John Doe or Jane Doe turns up they can be identified and I was like lmfao no thanks why would I do that when I know they're gonna send it everywhere, to advertisers, to law enforcement,... and I have no way of controlling it. People really don't give a fuck about their privacy. Honestly, it boggles me.
The problem is that to be able to tell you anything about relationships or heritage, they need a certain database, and the quality of that depends on the amount of entries to compare.
Without adding your data set to the collection, they would not gain anything to improve their database, which would de-value it in the long run.
A service that would analyse but not retain your data would have to pay other companies to provide input, and would therefore much more expensive.
@Treczoks@lemmy.world That's fine, but I'm more interested in the genertic markers that can be associated to diseases more than finding my ancestry tbh
Still, those reasons apply. If you want such a service, expect to pay way more than usual. I do expect that some companies offer such a service for VIPs and Celebrities who don't want to pop up in other peoples listings, but they probably pay for it through the nose.
Are you sure you cannot simply opt out while registering the sample? I live in Germany and I can only use these kinds of analyses for ethnicity/heritage analysis since genetic testing of risk factors as therelike are forbidden here. But I remember myheritage (which I used) asked me a lot of questions on how much data I want to share, what I want to share anonymously, what I want to share for research or keep in the database or sample storage for future analyses. I was also able to absolutely delete all data - account, sample destruction, genetic data - from every database. Comes with the obvious caveat that you cannot access any data from your initial analysis anymore but in my situation that was an ok trade off.
Seems to me the hard part is getting the customers to pay the "full" price of getting the genetic sequencing done. 23andme's prices to get tested is rather expensive (> $130 the last time I checked) but they are also getting paid for providing some of that data for various "studies". So they are getting paid to collect and keep the genetic data, so the consumer price of testing ($130) is subsidized by the other revenue channel (i.e. selling access to the data).
I don't know how much it costs to get your genes sequenced, but it's probably more than $130 per sample.
I see it like ads.... as much as everyone wants to complain about watching ads, the alternative is to pay the full price for the service you are consuming. Most of the services we consume are - after all - profit-making companies, and even the ones that aren't have bills that need paying.
If we could pick and choose what we share then it might not be so bad, but commodification of genetic information is weird.
@raydogg@lemmy.world the difference is that you can’t change your genetic information. It is more like your SSN.
Agreed.