So obviously weâre all on Lemmy for a complicated combination of reasons, but we all likely share some common ground, namelyâŚ
- 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 donât want meta to know even innocuous things; like how many times/when we message our grandma, and we donât google to know when weâre searching for remedies to a rash, and we donât want reddit to⌠Well we just donât want reddit - we donât want them to profit from or weaponize that data against us in a myriad ways.
We also donât 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 wouldnât 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?
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Unless you have a super compelling reason to get sequenced, do not use direct to consumer sequencing services or offerings. In general itâs 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 isnât 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 isnât 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 wasnât. 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 itâs âcommercially availableâ, 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 donât 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 âdata ownershipâ isnât really up to the individual users, itâs 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 âsmaller instanceâ argument doesnât really apply there for most users.
Even if you run your own instance, if youâre federated with other instances then your posts, comments and upvotes could still be scraped by someone else
No. They have that data forever. You canât take it back.
Who knows whatâs 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.
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 wouldnât bet my genetic data on that still being around in 50 yearsâ time either. I donât want to end up âuninsurableâ in a Gattaca kind of way.
Ai machine learning decentralized blockchain Eugenism 3.0 babyyy
Wouldnât trust any of them. Who knows where that data will end up. Especially when they suffer an inevitable breach
Most companies donât cooperate with law enforcement, itâs 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 wouldnât allow that. All of them have to let you delete your info whenever you want.
However if you donât trust for profit orgs then youâre 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.
Iâve had mine done and nobody has made an evil clone to frame me for killing the king yet, so itâs not too bad.
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 doesnât 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, donât go around killing people, but donât rely on these companies to protect your genetic privacy either.
Thatâs untrue. They uploaded it to Gedmatch which is the one website that allows these things. They didnât âpretend it was theirsâ, 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. Theyâve solved quite a few crimes and identified many unidentified bodies, including a number of murdered children.
Ok, maybe Iâm misremembering. There was some case where detectives simply submitted the DNA as their own, but maybe it was not GSK. Found this New York Times article: https://www.nytimes.com/2021/05/31/science/dna-police-laws.html
Ah. So at least in 2021 only two states had any laws against trolling genealogy databases at all. Before 2021 none did. How many of remaining 48 have passes any laws about it since?
As I said, a website cannot âallowâ something if the police have a court order. They can only obey. Before 2021 police in Maryland could get genealogy info without court order. Now they can get it with one.
Ok, so in Montana only:
What does waving entail?
Ok, so GEDmatch and FamilyTreeDNA were used, without court orderâŚ
Apparently that âneed to opt inâ you mentioned does exist, but itâs more like an opt out really.
Aha! So GEDmatch and FamilyTreeDNA did and are giving police DNA info upon request without court order, and 23andMe and Ancestry are giving police DNA info with court order only. We can now construct this matrix:
Can police get your DNA data from genealogy database?
You see it gets rather complicated⌠Rather than telling users to play 3SAT with the latest legal rules of their state, itâs easier to simply say âIf you submit your DNA for sequencing, police might get it.â
Oh wow, what a case! Again, all this deception legal at the time, and still legal in 49 states without court order, and legal in Maryland with court order.
Youâre getting a bit confused here. Gedmatch cooperates with law enforcement but itâs only if youâve chosen to, so itâs a program you need to opt in to. This is legal.
Some of what youâve found is about how the police use DNA in general, for example going into bins to get you or your relatives DNA, this is unrelated to genetic genealogy and has been done for decades.
Now one thing that could happen is police requesting your DNA by court order, this is already done, not through genetic genealogy though, they can just get it from you. If the police get a court order to obtain your DNA then theyâre swabbing you themselves, or as previously mentioned, just getting it from your bin.
Police can not request everyones DNA by court order. Thatâs not how laws work, and if they wanted to use genetic genealogy privately then theyâd need access to the entire database, millions of people in dozens of countries, and each one would need to be requested individually with a full case to obtain. Thatâs impossible.
Police do have their own database of DNA theyâve legitimately obtained, itâs called CODIS. This can be used to find close relatives, so if your brother was arrested for a robbery and had his DNA collected, then your DNA was found in a murder scene they could link it to your brother using CODIS.
Am I still misunderstanding something?
To me that reads that the court order allows the police to use the genealogy database. For example:
Is that not a plausible scenario? What in the language of the law used by the NYT article makes you think this is disallowed? And remember, this is for Maryland only. The other 49 states can obtain a court order for any reason, be it murder or subway fare dodging.
Again, not what privacy advocates from the NYT article say:
I.e. more like opt-out than opt-in, and again, irrelevant in case of a court order.
So the first one, what youâre missing is
The law dictates it must have an opt in policy, so DNA being accessed is from volunteers basically.
Itâs also worth noting that if they had your DNA thereâs no need to steal your pizza because that will just provide the same DNA.
Itâs also discussing a Maryland law where prosecuters there have to apply to use those volunteers and have a certain level of crime to do so. In other states they can access the volunteers with less hoops to jump through. Nobody can access non volunteers.
On the âturned on by defaultâ statement, thatâs just untrue. It was never an opt out policy, it started as an open access arrangement then after legal challenges it became an opt in policy. You can look that up.
Now another misconception that Iâve noticed is what Gedmatch is, you canât submit spit to Gedmatch, itâs a site for people who have tested at other sites to upload their DNA file to compare against other users of the site.
ETA - Thereâs also no addresses on Gedmatch, the police would email you and ask for your details. You can submit addresses to Ancestry for example if you want, but thereâs no requirement to, or for that matter your name, email, etc etc. In cases currently being worked on they have had leads closed because people wonât reply to a message.
You are splitting hairs. Unless you took precautions to use a fake name and an untraceable email address, the police are showing up at your door. Itâs what they do.
Hereâs the gedmatch page describing their policy, and hereâs the screenshot they use to illustrate it:
âPublicâ is selected by default. Yeah yeah, they added âpublic opt-inâ and âpublic opt-outâ options in 2019 and forgot to update their screenshot, but I bet âpublic opt-inâ is still selected by default. The NYT article says exactly that too. It is just untrue to call that âjust untrueâ! And can you guess what happened to all the people who uploaded their DNA data before 2019? Were all they automatically upgraded to âpublic opt-inâ? I donât understand why you are so adamant to protect gedmatch saying âgo ahead, upload your DNA freely!â when we know for sure that it was a free-for-all at least until 2019.
And you are still splitting hairs because you havenât refuted my main claim that police can get your data with a warrant. All that âopt-in/opt-outâ is for the gedmatchâs voluntary police information warrantless sharing program. I have seen no indication that gedmatch will not search the entire database for a match upon police request with a warrant. I have reason to believe that they will, because I know the state is sovereign. You cannot shield your information stored at third parties from government search just because you signed a privacy agreement with them.
The law of the state of Maryland, not the other 49 states. And I looked up the actual law, it doesnât actually say âopt-inâ contrary to the news article description of it:
https://mgaleg.maryland.gov/mgawebsite/Legislation/Details/hb0240?ys=2021RS https://mgaleg.maryland.gov/2021RS/Chapters_noln/CH_681_hb0240e.pdf
To me that sounds more like âproviding a warningâ than providing an âopt-in/opt-outâ system. The âacknowledgment and consentâ could be as simple as clicking âI agree to terms of serviceâ. Hereâs what gedmatch privacy policy says:
I am not a lawyer but to me that sounds like an explicit notice that law enforcement may get my data and satisfies the Maryland law requirement for a warrant. Specifically, gedmatch policy does not say they will ignore a warrant if you opt out. Again, my assertion is that the opt-in/opt-out system is for the voluntary warrantless information sharing system, and the warrants described in Maryland law are separate from that.
You also imply that 23andMe and ancestry.com do NOT share any information with law enforcement because they do not have an opt-in system. This is also false. Hereâs ancestry.com policy:
They WILL give up your DNA data to a valid warrant. The only question in my mind is whether they will also search the entire database for a given police sample. There is this article that says ancestry.com refused a police warrant in 2019 as improper, and police did not push the matter further. But it is unclear if ancestry.com was refusing to search its database on principle, or whether that one warrant in particular was faulty. Like if the police request âall 15 million DNA recordsâ because they are idiots and donât know how databases work there is grounds to argue that is too broad of a request. But we donât have the text of the actual warrant. There are other articles that say police have been using specifically ancestry.com successfully to investigate crimes.
Someone would need to search the actual court cases where police used genealogy data to find suspects to confirm whether every single instance has used GEDMatch voluntary opt-in service, or whether police warrants have successfully retrieved match data from GEDMatch full database and from ancestry.com and 23andMe. I do not have such access.
EVEN IF ancestry.com and GEDmatch refuse warrants to search non-opt-in DNA in databases, such refusals have not yet been tested in court.
EVEN IF the Maryland law is amended/interpreted to mean that police cannot search non-opt-in DNA in databases even with a warrant (a voluntary restriction of the state on its own sovereign power, quite possible!), and EVEN IF the opt-in is made an explicit choice made in consultation with a âtrained bioethicistâ instead of an âI agreeâ checkbox below Terms of Service, and EVEN IF all other 49 states pass the same law as Maryland, it would STILL not be perfectly safe to upload your DNA to these services. Just as Maryland law changed in 2019, so it can change again. As weâve seen with Roe v. Wade even long-established laws are not safe when there is a political interest to change them.
That is a very long email filled with a lot of waffle which is based on things you seem to be worried about due to not understanding the situation. Iâm not helping you with everything but read what youâre typing, youâve put a post about needing explicit consent to use DNA and then made up a story that people can be tricked. Not how it works.
The screenshot youâve found of Gedmatch isnât anything to do with police at all.
Finally, youâve claimed I havenât answered the court case suggestion, which I did a message or two ago. If they have a case strong enough to get your DNA then they can get it from you. No need to go faffing about with websites.
To use genetic genealogy you need access to a database of users, each of those peoples data is protected and in order to use them each time you would need to make a valid case for each persons DNA. That means hundreds of thousands individual cases and you wouldnât get permission as theres no cause.
I wouldnât necessarily consider that harmless, my momâs family is Jewish and thatâs kinda disrespectful given their history of doing that to Holocaust victims without their consent.
I agree that itâs offensive, I just mean from a danger point of view, theyâre just looking for the names of dead people, not your personal data.
They might not now but whoâs 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 itâs unlikely though, as a for profit company theyâd close down pretty quickly if they allowed it and people stopped buying.
Do you have a source on that LDS thing? Iâd like to read about it
I canât 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 âconvertedâ to the LDS cult.
hm. that doesnât say anything about the mormans owning genealogy dbs though.
The Mormons created the databases. They literally went to Europe and volunteered to manually enter handwritten records that survived World War ii. Source, I used to work for ancestry.
That has nothing to do with dna databases. I understand mormans did a ton of ancestry research, but none of those sources say anything about using DNA genome sequencing to accomplish what youâre talking about.
I wasnât talking about dna. I was talking about genealogical databases. After the DNA hit is made, they use a genealogy database to find relatives. Also⌠Who do you think owns Ancestry DNA?? Look up My Family Inc. Theyâre Mormons.
The entire point of the post was about DNA sequencing. If youâre going to change the subject say so.
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 wonât 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 (canât be compelled to turn over data that doesnât exist). And this post claims you can create an anonymous account.