this post was submitted on 15 Jul 2023
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44
Are any of the DNA testing companies trustworthy? (lemmy.world)
submitted 1 year ago by [email protected] to c/[email protected]
53 comments fedilink hide all child comments
 

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?

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[–] [email protected] 28 points 1 year ago (2 children)

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.

[–] [email protected] 2 points 1 year ago

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.

[–] [email protected] 2 points 1 year ago (1 children)

Do you know, are there typically any scenarios where work with a geneticist at a hospital may be covered by insurance?

[–] [email protected] 1 points 1 year ago

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.

[–] [email protected] 27 points 1 year ago (1 children)

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?

[–] [email protected] 3 points 1 year ago (1 children)

A small lemmy instance = a small dataset = less desirable to advertisers = less valuable for the owner of the instance to attempt to sell

[–] [email protected] 4 points 1 year ago (1 children)

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.

[–] [email protected] 2 points 1 year ago

Even if you run your own instance, if you're federated with other instances then your posts, comments and upvotes could still be scraped by someone else

[–] [email protected] 17 points 1 year ago (2 children)

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.

[–] [email protected] 6 points 1 year ago

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.

[–] [email protected] 6 points 1 year ago

Ai machine learning decentralized blockchain Eugenism 3.0 babyyy

[–] [email protected] 9 points 1 year ago

Wouldn't trust any of them. Who knows where that data will end up. Especially when they suffer an inevitable breach

[–] [email protected] 8 points 1 year ago (4 children)

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.

[–] [email protected] 3 points 1 year ago (1 children)

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.

[–] [email protected] 5 points 1 year ago (1 children)

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.

[–] [email protected] 1 points 1 year ago (1 children)

Ok, maybe I'm 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

May 31, 2021 New laws in Maryland and Montana are the first in the nation to restrict law enforcement’s use of genetic genealogy, the DNA matching technique that in 2018 identified the Golden State Killer, in an effort to ensure the genetic privacy of the accused and their relatives.

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?

Beginning on Oct. 1, investigators working on Maryland cases will need a judge’s signoff before using the method, in which a “profile” of thousands of DNA markers from a crime scene is uploaded to genealogy websites to find relatives of the culprit.

As I said, a website cannot "allow" 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.

Montana’s new law, sponsored by a Republican, is narrower, requiring that government investigators obtain a search warrant before using a consumer DNA database, unless the consumer has waived the right to privacy.

Ok, so in Montana only:

  • with court order, can get all DNA data
  • without court order, can get DNA data of consumers who waved their privacy rights

What does waving entail?

Privacy advocates like Ms. Ram have been worried about genetic genealogy since 2018, when it was used to great fanfare to reveal the identity of the Golden State Killer, who murdered 13 people and raped dozens of women in the 1970s and ’80s. After matching the killer’s DNA to entries in two large genealogy databases, GEDmatch and FamilyTreeDNA, investigators in California identified some of the culprit’s cousins, and then spent months building his family tree to deduce his name — Joseph James DeAngelo Jr. — and arrest him.

Ok, so GEDmatch and FamilyTreeDNA were used, without court order...

Another sticky provision: Investigators may use only genealogy companies that have explicitly informed the public and their customers that law enforcement uses their databases, and that have asked for their customers’ consent to participate. Currently, customers of GEDmatch and FamilyTreeDNA are given a choice about whether to participate in these searches. But the companies provide little information about what those searches entail, and the opt-in settings are turned on by default.

Apparently that "need to opt in" you mentioned does exist, but it's more like an opt out really.

Unlike 23andMe and Ancestry, which have kept their immense genetic databases unavailable to law enforcement without a court order, GEDmatch and FamilyTreeDNA are eager to cooperate.

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?

GEDMatch FamilyTreeDNA - 23andMe Ancestry
with optout default
Maryland w/o court order no no no no
Maryland w/ court order yes yes yes yes
Montana w/o court order no yes no no
Montana w/ court order yes yes yes yes
other 48 states w/o court order no yes no no
other 48 states w/ court order yes yes yes yes

You see it gets rather complicated... Rather than telling users to play 3SAT with the latest legal rules of their state, it's easier to simply say "If you submit your DNA for sequencing, police might get it."

In other cases, detectives might surreptitiously collect the DNA of a suspect’s relative by testing an object that the relative discarded in the trash. Maryland’s new law states that when police officers test the DNA of “third parties” — people other than the suspect — they must get consent in writing first, unless a judge approves deceptive collection.

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.

[–] [email protected] 1 points 1 year ago (1 children)

You're getting a bit confused here. Gedmatch cooperates with law enforcement but it's only if you've chosen to, so it's a program you need to opt in to. This is legal.

Some of what you've 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 they're swabbing you themselves, or as previously mentioned, just getting it from your bin.

Police can not request everyones DNA by court order. That's not how laws work, and if they wanted to use genetic genealogy privately then they'd 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. That's impossible.

Police do have their own database of DNA they've legitimately obtained, it's 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.

[–] [email protected] 1 points 1 year ago (1 children)

this is unrelated to genetic genealogy

Am I still misunderstanding something?

Beginning on Oct. 1, investigators working on Maryland cases will need a judge’s signoff before using the method, in which a “profile” of thousands of DNA markers from a crime scene is uploaded to genealogy websites to find relatives of the culprit. The new law, sponsored by Democratic lawmakers, also dictates that the technique be used only for serious crimes, such as murder and sexual assault. And it states that investigators may only use websites with strict policies around user consent.

To me that reads that the court order allows the police to use the genealogy database. For example:

  • I am curious about my genes
  • I submit my DNA for sequencing
  • Some years later some cousin rapes and murders someone, dumps the body
  • Police find body, find unknown DNA
  • Police get court order in murder case
  • Police force genealogy database to scan for matching DNA
  • Genealogy database gives police my name
  • Police show up at my door, start asking if I have any relatives that "kinda like to rape people"
  • Police hang out behind my house, steal the pizza crust from my trash bin for further DNA tests

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.

it’s a program you need to opt in to

Again, not what privacy advocates from the NYT article say:

Currently, customers of GEDmatch and FamilyTreeDNA are given a choice about whether to participate in these searches. But the companies provide little information about what those searches entail, and the opt-in settings are turned on by default.

I.e. more like opt-out than opt-in, and again, irrelevant in case of a court order.

[–] [email protected] 2 points 1 year ago* (last edited 1 year ago) (1 children)

So the first one, what you're missing is

And it states that investigators may only use websites with strict policies around user consent.

The law dictates it must have an opt in policy, so DNA being accessed is from volunteers basically.
It's also worth noting that if they had your DNA there's no need to steal your pizza because that will just provide the same DNA.

It's 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 'turned on by default' statement, that's 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 I've noticed is what Gedmatch is, you can't submit spit to Gedmatch, it's a site for people who have tested at other sites to upload their DNA file to compare against other users of the site.

ETA - There's 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 there's 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 won't reply to a message.

[–] [email protected] 1 points 1 year ago (1 children)

There’s also no addresses on Gedmatch, the police would email you and ask for your details.

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. It's what they do.

On the ‘turned on by default’ statement, that’s just untrue.

Here's the gedmatch page describing their policy, and here's the screenshot they use to illustrate it:

"Public" is selected by default. Yeah yeah, they added "public opt-in" and "public opt-out" options in 2019 and forgot to update their screenshot, but I bet "public opt-in" is still selected by default. The NYT article says exactly that too. It is just untrue to call that "just untrue"! And can you guess what happened to all the people who uploaded their DNA data before 2019? Were all they automatically upgraded to "public opt-in"? I don't understand why you are so adamant to protect gedmatch saying "go ahead, upload your DNA freely!" when we know for sure that it was a free-for-all at least until 2019.

And you are still splitting hairs because you haven't refuted my main claim that police can get your data with a warrant. All that "opt-in/opt-out" is for the gedmatch's 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 dictates it must have an opt in policy

The law of the state of Maryland, not the other 49 states. And I looked up the actual law, it doesn't actually say "opt-in" 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

(D) FGGS MAY ONLY BE CONDUCTED USING A DIRECT–TO–CONSUMER OR PUBLICLY AVAILABLE OPEN–DATA PERSONAL GENOMICS DATABASE THAT: (1) PROVIDES EXPLICIT NOTICE TO ITS SERVICE USERS AND THE PUBLIC THAT LAW ENFORCEMENT MAY USE ITS SERVICE SITES TO INVESTIGATE CRIMES OR TO IDENTIFY UNIDENTIFIED HUMAN REMAINS; AND (2) SEEKS ACKNOWLEDGMENT AND CONSENT FROM ITS SERVICE USERS REGARDING THE SUBSTANCE OF THE NOTICE DESCRIBED IN ITEM (1) OF THIS SUBSECTION.

To me that sounds more like "providing a warning" than providing an "opt-in/opt-out" system. The "acknowledgment and consent" could be as simple as clicking "I agree to terms of service". Here's what gedmatch privacy policy says:

some of these possible uses of Raw Data, personal information, and/or Genealogy Data by any registered user of GEDmatch include but are not limited to:
Familial searching by third parties such as law enforcement agencies to identify the perpetrator of a crime, or to identify remains.
...
We may disclose your Raw Data, personal information, and/or Genealogy Data if it is necessary to comply with a legal obligation such as a subpoena or warrant.
...
we may use and disclose personal information for meeting legal requirements and enforcing legal terms, as described in more detail above

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. Here's ancestry.com policy:

Ancestry will release basic subscriber information as defined in 18 USC § 2703(c)(2) about Ancestry users to law enforcement only in response to a valid trial, grand jury or administrative subpoena.

Ancestry will release additional account information or transactional information pertaining to an account (such as search terms, but not including the contents of communications) only in response to a court order issued pursuant to 18 USC § 2703(d).

Contents of communications and any data relating to the DNA of an Ancestry user will be released only pursuant to a valid search warrant from a government agency with proper jurisdiction.

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 "all 15 million DNA records" because they are idiots and don't know how databases work there is grounds to argue that is too broad of a request. But we don't 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 "trained bioethicist" instead of an "I agree" 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 we've seen with Roe v. Wade even long-established laws are not safe when there is a political interest to change them.

[–] [email protected] 1 points 1 year ago

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. I'm not helping you with everything but read what you're typing, you've 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 you've found of Gedmatch isn't anything to do with police at all.

Finally, you've claimed I haven't 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 wouldn't get permission as theres no cause.

[–] [email protected] 2 points 1 year ago (1 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.

[–] [email protected] 2 points 1 year ago

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.

[–] [email protected] 1 points 1 year ago (2 children)

Do you have a source on that LDS thing? I’d like to read about it

[–] [email protected] 3 points 1 year ago

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.

[–] [email protected] 2 points 1 year ago (1 children)

Hundreds of thousands of Holocaust victims were posthumously "converted" to the LDS cult.

[–] [email protected] 1 points 1 year ago (1 children)

hm. that doesn't say anything about the mormans owning genealogy dbs though.

[–] [email protected] 1 points 1 year ago (1 children)

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.

[–] [email protected] 0 points 1 year ago (1 children)

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 you’re talking about.

[–] [email protected] 0 points 1 year ago* (last edited 1 year ago) (1 children)

I wasn't 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. They're Mormons.

[–] [email protected] 1 points 1 year ago

The entire point of the post was about DNA sequencing. If you’re going to change the subject say so.

[–] [email protected] 1 points 1 year ago* (last edited 1 year ago) (1 children)

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.

[–] [email protected] 1 points 1 year ago

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.

[–] [email protected] 0 points 1 year ago (1 children)

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.

[–] [email protected] 1 points 1 year ago (2 children)

!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?

[–] [email protected] 1 points 1 year ago

But everything you said would happen anyway if a close relative took the test.

[–] [email protected] 1 points 1 year ago (1 children)

Gotcha! I'll remind you at Tuesday, September 28, 2032, 9:45:07 PM UTC.

[–] [email protected] 1 points 1 year ago

Good bot

[–] [email protected] 0 points 1 year ago* (last edited 1 year ago)

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.

[–] [email protected] -1 points 1 year ago

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.

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