Are any of the DNA testing companies trustworthy?
Are any of the DNA testing companies trustworthy?
So obviously we're all on Lemmy for a complicated combination of reasons, but we all likely share some common ground, namely...
- need for privacy
- need to own/control/access the data we produce
- healthy skepticism about the trustworthiness of for-profit corporations, in general
So if we don't want meta to know even innocuous things; like how many times/when we message our grandma, and we don't google to know when we're searching for remedies to a rash, and we don't want reddit to... Well we just don't want reddit - we don't want them to profit from or weaponize that data against us in a myriad ways.
We also don't want them artificially removing features and creating tiered layers of service/value hidden behind a paywall (I understand this is very present in the some of the commercially available DNA services).
So that brings me to DNA testing services. Since they started to emerge in the mainstream they were immediately an interesting, exciting novelty and I also knew it was data I wouldn't feel safe trusting with a for-profit org - with broken systems like law enforcement and health insurers on speed dial and just salivating for the goodies they collect.
So all that considered, any groups that provide this type of service that you do trust/use, and why?
Unless you have a super compelling reason to get sequenced, do not use direct to consumer sequencing services or offerings. In general it's not so much the tech or whatnot that is bad, but rather without being in a position to determine if you have some genetic, prospective genetic screening isn't ideal.
If you feel you have a good reason to be sequenced (eg family history of a kind of cancer, particularly breast and colon), seek out a genetics consult with a genetic counsellor or geneticist at a major hospital or academic center.
This comment isn't to constitute any kind of medical advice. Rather, you are much better served getting sequenced done well.
I just want to cosign on this. I found out that I have Lynch syndrome, which carries an 80% chance of colon cancer and 60% likelihood of endometrial cancer. I thought I was prepared to hear that I had it, but I wasn't. When I heard my test was positive, I freaked out. I was really glad to have a licensed genetics counselor deliver the news and talk with me in the following weeks and months as I adjusted.
Do you know, are there typically any scenarios where work with a geneticist at a hospital may be covered by insurance?
I do not as this is not my expertise. In general though, reaching out to specialty academic/medical units are usually a great first step for pursuing something particularly esoteric.
None. As long as it's "commercially available", their interest is no longer aligned with yours.
Also, unless you are running your own Lemmy instance, I question your assumptions that using Lemmy is actually an upgrade to privacy and data ownership. I heard this point a lot and I don't see the basis for this. Can you explain?
A small lemmy instance = a small dataset = less desirable to advertisers = less valuable for the owner of the instance to attempt to sell
Which is kind of my point. Even on Lemmy the "data ownership" isn't really up to the individual users, it's the instance owners. The only way to 100% control where your data goes (as an user) and who looks at it, is if you run your own instance. Otherwise you are still at the mercy of another master, hopefully a more benevolent one.
And if the instance that most new users default to is lemmy.world and that instance is 100K users strong, I think the "smaller instance" argument doesn't really apply there for most users.
No. They have that data forever. You can’t take it back.
Who knows what’s going to happen to it in 20-50 years, people never seem to consider those timescales when handing over their data to companies.
Worst part is, there is a solid chance they already have all your data from a sibling or close relative.
Ai machine learning decentralized blockchain Eugenism 3.0 babyyy
Who knows what’s going to happen to it in 20-50 years, people never seem to consider those timescales when handing over their data to companies.
This is what gets me too. We live in a culture where hostile takeovers are a thing.
In my country we have universal healthcare but I wouldn't bet my genetic data on that still being around in 50 years' time either. I don't want to end up "uninsurable" in a Gattaca kind of way.
Wouldn't trust any of them. Who knows where that data will end up. Especially when they suffer an inevitable breach
Most companies don't cooperate with law enforcement, it's only Gedmatch who do currently and you need to personally opt in to that because they originally gave free access and there was a legal challenge. None will give info to health insurance companies, privacy laws in most places wouldn't allow that. All of them have to let you delete your info whenever you want.
However if you don't trust for profit orgs then you're out of luck. Many of them are run by the LDS though, and their goal is to get your family tree so that they can baptise your dead relatives, so like, kinda harmless as far as corporate strategy goes.
I've had mine done and nobody has made an evil clone to frame me for killing the king yet, so it's not too bad.
Most companies don’t cooperate with law enforcement
All companies are still subject to the jurisdiction of their country. Perhaps you meant they are not voluntarily sending an unsolicited copy of every DNA profile to the nearest law enforcement office, but they still obey court warrants and extrajudicial subpoenas like National Security Letters.
Moreover, law enforcement doesn't even need to submit an official request. The Golden State Killer was caught after police detectives uploaded his DNA to a personal genomics website in 2017 pretending it was theirs. The website returned a list of relatives, which police used to find the killer. This was all perfectly legal.
For sure, don't go around killing people, but don't rely on these companies to protect your genetic privacy either.
The Golden State Killer was caught after police detectives uploaded his DNA to a personal genomics website in 2017 pretending it was theirs.
That's untrue. They uploaded it to Gedmatch which is the one website that allows these things. They didn't 'pretend it was theirs', they legitimately uploaded it from a police account. They do this a lot but you need to opt in now due to the legal challenges. They've solved quite a few crimes and identified many unidentified bodies, including a number of murdered children.
I wouldn't necessarily consider that harmless, my mom's family is Jewish and that's kinda disrespectful given their history of doing that to Holocaust victims without their consent.
I agree that it's offensive, I just mean from a danger point of view, they're just looking for the names of dead people, not your personal data.
Do you have a source on that LDS thing? I’d like to read about it
I can't find a good site that explains everything but this one explains how they use genealogy to collect names to baptise -
https://www.al.com/living/2012/08/mormons_use_genealogy_at_churc.html
They then use a proxy person to run a baptism for them.
Hundreds of thousands of Holocaust victims were posthumously "converted" to the LDS cult.
They might not now but who’s to say what happens in 10-50 years. You should assume that law enforcement (and other malicious actors) will have your genetic info.
If it happened you could delete your data. I think it's unlikely though, as a for profit company they'd close down pretty quickly if they allowed it and people stopped buying.
Your DNA mostly isn't yours anyway. Your siblings are largely the same. I did a 23 and me years ago. No regrets yet. I'm eventually going to die probably in 40-50 years. I just don't see how it can be used against me.
!Remindme in 10 years
That's because you're looking for direct, immediate, tangible impact to yourself personally - respectfully, that's a rather shallow, self-focused view.
Tell me, in detail, how your health/life insurance premiums are calculated? Do you know that data from these companies, even in aggregate, isn't being taken into consideration when they set process for your geographical location?
Certain data used to be off limits to governments, new law gets passed around major events that can change that. With the type of people that have gotten close to our have held power recently, do you want that data collected and in easy reach?
If you have the markers in your genes that predispose you to say alcoholism or drug addiction, would you want vodka companies to be able to ad target you?
Musk showed that billionaires can buy massive corporations at will and use them for their own agendas, do you want all that data accessible for musk or the next musk when one of those hipster-eugenics peddling natalist fascists decides they want a new project to "improve humanity" in their image?
If you do use one use fake data at least. Temp phone number and throwaway email. Fake name and address if needed. You can rent a P.O box if you need to receive a package.
All they need is the DNA to sequence. The account details won't make a difference as long as you can access it. You can ask a friend to pay for you and pay them cash or use privacy.com or one of those prepaid debit cards.
sequencing.com seems to say the right things about privacy. Including the possibility to delete your data (can’t be compelled to turn over data that doesn’t exist). And this post claims you can create an anonymous account.