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Breach exposed more than one million DNA profiles on a major genealogy database (buzzfeednews.com)
698 points by pseudolus on July 22, 2020 | hide | past | favorite | 397 comments



And half the DNA of all of the siblings and parents of the people that submitted their DNA, a quarter of their grandparents and grandchildren and so on. That's what I really hate about these companies, they get people to submit their DNA and the customers do not realize it isn't a decision that affects just them.


In terms of medical data the amount of leakage is somewhat limited by the nature of DNA, e.g because you get a random mix you can't conclude anything about parents, etc medical status.

By far the biggest practical knock-on effect is if you match someone who's doesn't know their parentage (adoption/illegitimate children/etc) who can figure out their parentage as a result of that match.

Familial DNA crime searches are probably the next biggest, but they're still very rare at the moment and many of the DNA platforms don't allow them (GEDMatch was one of the few that do).


> and many of the DNA platforms don't allow them

I’m assuming that the stolen information doesn’t have this limitation.


> I’m assuming that the stolen information doesn’t have this limitation

Stolen information has provenance problems that make it difficult to use as evidence of any crime other than theft itself in any system with even rudimentary due process protections and presumption of innocence.

I mean, it's hardly as if you are going to be able to get the people who handled the data between the people who had it lawfully and the time it got to the police on the stand to attest to it's integrity.

(That doesn't prevent its use in investigations, but it means that it would only lead to convictions in a contested case where the police used it to locate proof that was legally sufficient without the use of the DNA as evidence.)


Law enforcement is trained in information laundering and courts consider it a legitimate tactic.


Its easy to use this information to search for suspects, but not bring it up in court once you find other evidence.

https://en.wikipedia.org/wiki/Parallel_construction


Most law enforcement typically use a handful of commercial agencies (like Parabon NanoLabs, etc) for these kind of searches, it seems highly unlikely that any of them would risk using illegally obtained data because it would put their entire business at risk.

(obviously if your threat model includes intelligence agencies, etc. then your calculus might be different)


And of course law enforcement has never before used illegally obtained evidence to construct a new trail that was plausible:

https://en.wikipedia.org/wiki/Parallel_construction


It's not about law enforcement using the data, it's about the viability of running a business that provides illegal hacking services for law enforcement.


Works for Hacking Team and NSO.


Honestly all I see is upside for the business. Are they even obliged to "show their work" for how they produce an identity and distance?


I’m cackling at the idea of GDPR compliant data thieves. “This data is only to be used for the purposes of: anything. The data controller is: whoever.”


If a child has 2 copies of a variant you know both parents have at least 1 copy.

You know what parent a male's X and Y came from.

You can use phasing and linkage to reconstruct parental haplotypes.


> You know what parent a male's X and Y came from.

You can identify which parent any chromosome came from. They're all marked, and the same genetics may do sharply different things depending on whether it was inherited from the father or the mother.

Inability to recover this data has nothing to do with "the nature of DNA" -- the data is very much present in the DNA. It's unrecoverable because when we summarize DNA, we leave it out.


> You can identify which parent any chromosome came from. They're all marked, and the same genetics may do sharply different things depending on whether it was inherited from the father or the mother.

I did not know this. This sounds interesting! Can you provide any google search terms (or a link) where I can read more about this? (e.g. a name of what they are marked with) This surprises me. I thought that there was a process by which portions of the two copies of a chromosome get switched between the two. Is that right? How does that fit together with these markings?

(If these questions would be answered by searching for whatever search term or reading whatever link you provide, I would consider providing said search term or link to be answering these questions)


> Can you provide any google search terms (or a link) where I can read more about this? (e.g. a name of what they are marked with)

The term I know related to this is "methylation". https://en.wikipedia.org/wiki/DNA_methylation . I don't know all that much about it; I would not want to claim that methylation is the only such mechanism, or that this is the only information expressed by DNA methylation.

> I thought that there was a process by which portions of the two copies of a chromosome get switched between the two. Is that right? How does that fit together with these markings?

Yes, that's correct. "Crossing over" does not occur during ordinary cell division ("mitosis"), in which one of your cells divides into two of your cells -- your chromosomes should stay the same (except for new mutations) through your life.

But it does occur during meiosis, the process by which one of your cells divides into four sperm or four eggs (these are "gametes", and in terms of chromosome content they are only half-cells, not full cells). Your children's chromosomes may therefore differ from yours.

So the interaction between parental marking and crossing over would broadly look like:

1. You are going to produce four gametes.

2. Remove the parental marking (indicating the sex of the gamete's grandparent) from the cell undergoing meiosis.

3. Do the crossing over.

4. Apply parental marking indicating your own sex (the gamete's parent, rather than grandparent).

5. Divide into four cells.

I don't actually know where the unmarking and remarking occur in the process; maybe reality is more like 2435, or 3254. But both crossing over and applying correct parental marking are part of meiosis -- since meiosis produces a cell that belongs to your child rather than a cell that belongs to you, it's easy to know what kind of marking should be applied.


Ahhh, cool, thank you! That makes sense now, thanks!


Yes, but there's generally not much medical data you can infer from those.

You're right that you could reconstruct parental haplotypes, but that reveals a fairly limited amount of data, typically you'll share haplotypes with many millions of people.


Yes, but there's generally not much medical data you can infer from those.

Not yet.


What would insurance companies do with the data though? If they knew you were predisposed to obesity and cancer due to this data, would they be kind enough to ignore that info?


Federal law prohibits health insurers from using DNA data for underwriting and pricing.


And if it didn't the insurance companies could just demand a dna test before underwriting any policies.


If we’re hypothetically considering what they could do if they weren’t one of the most regulated industries, they have exponentially better options for limiting their risk than requesting DNA.


It would be a sound business decision (who takes on unnecessary risk or costs willingly?), and yet another reason to support universal healthcare.


It’s not only medical data that’s of concern, but also nation states Could try to use the data to identify embedded foreign agents/spies implanted in their country. Those are the ones without diplomatic cover


Ignorant question here. How is this not regulated through HIPAA? Shouldn't these board members of this company face prison? DNA, a prosecutor could argue is a unique health identifier.

"Access to equipment containing health information should be carefully controlled and monitored."

https://en.wikipedia.org/wiki/Health_Insurance_Portability_a...


People think of HIPAA as a generic cover-all medical privacy law for some reason.

It's not, not even close, It's a law that very narrowly applies mainly to insurance companies and healthcare entities that accept medical insurance.

As a general rule - if insurance is never involved HIPAA doesn't apply.

If you got a DNA test prescribed by your doctor for a diagnosis or even for genetic counseling then HIPAA applies. It's not the nature of the data, it's the nature of the organization dealing with the data.

I have no idea where this mass misunderstanding came from


"if insurance is never involved HIPAA doesn't apply."

No. This is just plain false.

HIPAA applies when personally identifiable health information is shared/exchanged. And it applies whether the data is electronic or physical (paper).

(I am NOT saying DNA falls within the HIPAA guidelines.)


No, personally identifiable health information can be shared/exchanged without HIPAA applying. For example if I email my grandma information about my cancer diagnosis, Gmail isn't HIPAA compliant and doesn't need to be just because some people might use it to talk about their health. Grandma is also free to share my health information with impunity, she is free to, say, forward it to my boss because grandma doesn't have to abide by HIPAA either because she's a grandma.


Correct, you can personally share whatever information you like.

But a covered entity may not. And there are many covered entities which are not insurance related. That is all I was trying to say.


The privacy rule only applies covered entities. If a covered entity works with cloud provider, they sign a BAA. The cloud provider is not a covered entity.


HIPPA only applies to a specific list of covered entities... health providers, insurance, etc.

DNA services are not currently considered covered entities.

They should be, IMO, but I believe Congress would have to act.


More accurately "Dna services for funsies" are not covered entities. Medical labs that sequence DNA in the realm of actual healthcare (and accept medical insurance) are covered entities.


if they construe their DNA data as not health information, but instead information like finger prints?


"I'm standing here in this chalk circle where HIPAA does not apply, can't touch me, nyah nyah!" Sounds like that would work against a 5-year-old sibling, but that's rarely the case...


It's not covered. The ones at which we should be most angry are law enforcement officers using this information. This is simply a first step to the state collecting DNA on all citizens (see what it's done with fingerprints as an example.)


This is exactly how I feel about my friends/family having Facebook apps on their phone. I didn't consent to giving my contact info to Facebook. I wasn't given a choice.


Agreed. But at least I don't leak their data in return. I figure Facebook must have 99%+ coverage of the world's social graph by now, including all the holdouts. You may not have an account, but they know you exist, what you look like, what your phone number is and probably where you are just by observing the nodes that are still 'blank'. Shadow profiles should be assumed to be just as detailed as the rest. It's one reason why there are very few photographs of me online (or elsewhere). I'd like the option to go rogue one day to be open to me ;)


It is impossible to have an "expectation of privacy" over the DNA of your relatives. You need to live with it, and resolve your feelings to the reality of that situation.

You don't get a choice if your uncle, grandmother, aunt, niece or son share their DNA with law enforcement.


I'm not sure it's just feelings to be resolved. The problem is that even DNA matching, especially the SNP genotyping which tends to be used by consumer ancestry and heritage services, is not perfect. So your daughter can end up false-positively matching to a crime 20 years from now due to your uncle submitting his own DNA last year without you ever knowing. I'm not sure how anyone sufficiently familiar with the implications can just get over it and accept the reality of the situation. It is by no means an easy problem to solve.


That’s very true but it’s more of a criminal justice problem than a privacy problem. The same issue could happen (and has) with fingerprints or other biometric data.


Do they not realize? It's just served as a convenience for family trees and cure together services. Same mechanism with any "social app" that asks access to all your phone contacts to "easy friends discovery": you may have never used Tiktok or Facebook but they already know quite a few things about you thanks to an acquaintance. I know DNA stuff seems scarier in the long run but data from an address book are more easily exploitable.


So I should get the consent of my entire extended family before I ever submit my DNA to a service for analysis?


With likely very dire results, yes I think you should. If your mothers insurance rate goes up, since you got one of these dna tests for Christmas, she should be involved in the decision to publish this data in the first place.


In the US, Congress has passed a law that explicitly makes that specific practice illegal: https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscr...

What workarounds insurance companies come up with to circumvent the spirit of the law and how well it can be enforced will be interesting.


And George W. Bush, a Republican, signed this into law. I remember thinking that strange at the time because I would have thought insurance companies would want to be able to use DNA information and the Republicans being more of a "big business" party would have supported that.

Also, I found out last time this discussion came up on HN that the law prevents it being used for regular insurance but does not apply to life insurance.


And life insurance could just simply demand a dna sample from you before underwriting a policy just like they might demand a physical so the whole "concern" is entirely moot.

Insurance is highly regulated, insurance companies have specific legal ways to underwrite policies, the idea that life insurance companies are going to secretly use stolen data of uncertain provenance in their underwriting instead of just making you submit a dna sample is, quite frankly, silly.


What workarounds insurance companies come up with to ... will be interesting

If there's enough money to be made, I'm sure the Usual People will be persuaded to bend the law until it gives way.


I think so, yes. Otherwise you're sending large portions of their personally identifiable information to some sort of database without their consent.


Do you also think I should consult my identical twin for permission before uploading photos of myself to the internet? Why / why not?


Hardly a fair comparison. However the few identical twins I know have been very mindful of how their individual behavior affects the other.


Of course I realised the comparison would be somewhat controversial, it was actually the point of bringing it up. However, if you have the time I would appreciate it if you tried to articulate why you think the comparison is unfair, instead of just a general dismissal.


Your (twin’s) photo is unlikely to be used for:

* Identifying future medical risk factors

* Solving 30-year-old cold cases where DNA is the only evidence

* Identifying parentage in adoption cases


But my (twin's) photos could likely be used used for:

* Linking them to the location of a crime using Clearview AI and similar scraping facial recognition services

* Creating fake but believable defamatory photos and videos, such as deepfakes

* Being scraped and used in fake profiles by spambots and other nefarious actors

* Being exploited as a tool in identify theft and identify fraud, via various kinds of social engineering.

Do you not consider some of these scenarios worthy of a similar amount of consideration?


I consider them to be unavoidable, barring some extreme off-the-grid efforts. Your photo is out there. Your DNA doesn’t have to be.


I'd argue not, since a single photography contains much, much less information than a full DNA fingerprint.


Not for identifying or incriminating you it doesn't given the practical risk of how the information can be used.


That's a fair point. However, I'm not entirely sure I buy the premise. With the advent of deepfakes and internet scraping facial recognition, I think a public photo collection of your entire likeness could be considered least somewhat at risk for abuse, when compared to the risk that a confidential fingerprint with ~25% of your genes is leaked and then used against you.


Your data, your rules. I put my 23andme raw data in github (https://github.com/sbassi/MiGenomaSbassi) for the world to see and use without asking anybody in my family.


I strongly disagree. I consider it comparable to something like financial administration. In which an "expense" or "exchange" has two sides. Me, paying you, you receiving the money.

It is not up to me to decide to just release such data. Because it encodes other people's data too. If I were to release my financial records because "it's my data", i'd be exposing a lot of people, organisations and companies who I had interaction with.


But it is up to me to decide to release my financial records. All the parties I've dealt with have to expect the possibility (unless there is some signed agreement that prevents disclosing them).

With DNA I'm not so sure.


I'm pretty sure that if <insert ecommerce platform here> were to leak all their financial transactions, that is considered a large data-breach and would be considered a privacy infringement.

I am aware that "an ecommerce platform" is something else than "your personal finance", but the principle is the same: X shouldn't release other people's financial transactions just because those were done with X.


The federal Genetic Information Nondiscrimination Act does prohibit insurers from asking for or using your genetic information to make decisions about whether to sell you health insurance or how much to charge you. But those privacy protections don't apply to long-term-care policies, life insurance or disability insurance.

https://www.npr.org/sections/health-shots/2018/08/07/6360262...


The point is, it's not just your data. It's shared with other people who may not want it being publicised to all and sundry.


That's ridiculous. Should I not use my surname because I identify my parents, my brothers and some of my cousins? I think bodily autonomy applies here.


You are giving far more away with DNA information; it's not remotely the same.

The point is, at the very least it's a grey area, so to dismiss the counter points so airily as you have done on such a serious subject indicates - at best - a lack of reflection and respect for the rights of others.


No, but for having the results stored at some company.


This is really another example of a claim of "genetic exceptionalism", that genetic information has a special status among other sorts of personal information, that mostly is not true. Your personal information, broadly, is informative about your relatives, your friends, etc. This includes your personal health information, your personal financial information, your online habits, etc. Any time you share personal data, you are disclosing information about people associated with you, without their consent, that might be used against them. And often these other classes of personal data are more informative than genetic information.


I remember hearing about some dude in his 80's , arrested out of the blue, for a murder he committed ~30 years ago.

The police used the crime scene's partial DNA and compared it to somebody's 23andMe sample.

Thanks a lot, grandson!


That's probably the story you are referring to: https://www.sciencemag.org/news/2018/10/we-will-find-you-dna...


Oh, wow yep that's the one. Thanks for source!


Yeah, that was my biggest fear with these services. How do I stop my family members from falling for it? In the end, I can't and just have to live with their mistake (if they used these services).


Data breaches happen, doesn't mean using a service is a mistake.


Bringing criminals to justice is a positive outcome.

Negative outcomes include:

1. Racist people persecuting people based on their ancestry, as determined from DNA data.

1. Police performing incorrect DNA database searches and falsely accusing people of crimes. Example: https://www.pbs.org/newshour/show/a-father-took-an-at-home-d...

1. Police misconstruing DNA evidence and falsely accusing people of crimes. For example, a person's DNA can appear at a crime scene if they rode in a Lyft before a perpetrator.

1. Criminals extorting parents of sperm-donor children: Pay us or we'll reveal to your kids that he's not their dad.

1. Criminals extorting unfaithful parents: Pay us or we'll tell him that the kid isn't his. Pay us or we'll tell her about the child born from your affair. Pay us or we'll tell your religious group about your child born not to your spouse.

1. Criminals extorting people about their expected health outcomes: Pay us or we'll tell the shareholders about your 50% chance of getting disease X in the next 5 years. Pay us or we'll tell her that you're likely infertile. Pay us or we'll tell your kid that they will probably die by age 30.

1. Criminals extorting folks who have changed their identities: asylees, stalking victims, protected witnesses, etc.

1. Oppressive governments persecuting relatives of escaped asylees: Your brother who disappeared actually went to country X. We can't punish him so we're punishing you.


That's an argument from utility, which is not how you should approach matters of ethics.


Your comment is instructive. Would you care to expound?


Here's a thought:

"This is a GDPR erasure request. Your site contains my PII by way of that of my father. Please erase this information and indicate that you have complied within 30 days."

Shall I try it?


Yes, please!


I wouldn't consider DNA to be secret information. Given that you leave them every where you go.


There is a world of difference between

1. Having your DNA already in the database

2. Your DNA being out somewhere on the street where it could only be linked to you by name through a targeted reconnaissance effort


I think this is somewhat analogous to the privacy issues around Google Street View. Almost nobody thought the image of the front of their house was really private, but the idea of it being catalogued and searchable bothered more than a few. Removing the barrier of someone having to physically do the work to get that information at least made them feel more vulnerable.

Has Street View been a problem for the world in that way? I haven't personally experienced that. That's probably why the DNA database idea doesn't scare me. If you want to live in the world it's essentially impossible to keep your DNA a secret. It seems to me that eventually someone will pick it all up and organize it.


Your street view doesn’t contain your entire genetic record (including propensities towards disease, mental and physical, which could very easily be used to discriminate against you). So they’re not really comparable whatsoever.

And what is with this “this terrible thing X will happen eventually, so why not have it happen now?” argument I keep seeing nowadays? Your argument was quite literally: “Eventually someone will collect all your DNA”, so who cares if it’s now or later?


> Your street view doesn’t contain your entire genetic record (including propensities towards disease, mental and physical, which could very easily be used to discriminate against you).

Isn't this a form of victim blaming? How is this different than saying Black people should try to hide their skin color since in many cases they will be discriminated against because of it? We should be working to suppress the discrimination at it's source, not it's target.


You're right, working to reduce discrimination at source is undoubtedly worthwhile. But data does not exist in a vacuum - it is collected on behalf of, and used by, people.

Until we reach zero intolerance nirvana, you can't ignore that personal data collection at scale simplifies discrimination, and also opens up new methods for discriminating. Will there be benefits to society from personal data collection at scale? Of course. But there are also costs. There are plenty of examples of people whose ideas or products became used in unforeseen ways and regretted their actions.

Discrimination should be suppressed at source and systems that simplify its manifestation in the real world should be handled extra carefully.


I'm a little confused about what exactly the point of debate is here.

* Is your DNA a secret? I think the fact that you leave it everywhere means no.

* Should people be allowed to aggregate that information? It literally cannot be stopped so I think the point is moot.

I guess what I'm missing is any addressing of the reality of the situation. I'm guessing from the content of your reply that you think that the practice of cataloging DNA should be banned. Great. What happens when they do it anyway?


> Should people be allowed to aggregate that information? It literally cannot be stopped so I think the point is moot.

Just because you can't stop something doesn't mean you shouldn't even try. Otherwise we might skip having laws altogether.


I'm just looking for a helpful, actionable response. All I've seen so far is "X is bad" (not actionable) and "Let's ban X" (not helpful).

What good will it do you that there's an international ban on DNA databases when corporations use the impossible-to-stop one anyway to discriminate against and target you or the police use it anyway to throw you in prison.

The most helpful course of action imo is to learn how best to cope with this new reality. How should we set our expectations when our DNA is public and searchable? Are there behaviors that would once be safe but will not be in the future? I think those are the more relevant questions.


To your first point, you can go out to the street and bring home someone’s random dna, but there is no way you’d ever be able to know who’s dna it was.

... unless you were to look it up maybe, in this leaked dna database.

Dna is not inherently an identifier. It needs the lookup code in order to act as one. A database like this MAKES it no longer a secret.


I'm not talking about taking random samples off a sidewalk. I'm saying if you follow a person you know and collect something they've discarded, now they're in the database. Do that enough times and everyone's in it. That's the exact technique the police use to collect people's DNA without their consent.


> Is your DNA a secret? I think the fact that you leave it everywhere means no.

There is a complicated procedure to convert this skin scales to data. Not everybody is able to do it, so if is not a secret, neither is exactly open data.


Yes your DNA is a secret, just like your fingerprint is a secret.

Companies shouldn't be allowed to aggregate and resell that information. Hope the GDPR will give grounds to close shops doing that.

edit: typo DNS instead of DNA


> Yes your DNS is a secret, just like your fingerprint is a secret.

But is it really? I think the point being made here is that actually it is relatively easy to obtain someone's DNA. Is there a law that prevents someone who knows your name from picking up a discarded coffee cup and extracting your DNA? I think it's an interesting debate. Is your face private? Is the sound of your voice private? Those things are unique to you but anybody that interacts with you will be exposed to those features including possibly your DNA. I guess the concern is how the data is collected, what it is used for and in the case of DNA the impact it has on anybody that has a genetic link to us. I think it's fair to consider DNA in separate category. There's only so much that can be deduced from your face as compared to DNA. It's tricky...


It's made me run away from at least one business when I saw that their office address was basically an obviously unoccupied 2up 2down hovel.


By targeted reconnaissance effort do you mean trivial geographic correlation based on your phones location data. So if the Google Street View car had a DNA sequencer on the back and GPS recorded any fragments and location it could trivially reconstruct quite a bit. No one has done this yet, but it's utterly doable. DNA is not private information its the most public information you can imagine is not controllable in any way thats meaningful to traditional thoughts on data privacy.


If an action requires less investment and provides the same value, it will happen more frequently — economics. A database lookup requires less investment than a targeted DNA harvesting, sequencing, and location correlation operation.


So because it is supposed to be trivial to identify people based on GPS, phone and DNA (which I dont believe), it doesn't matter if one gets his data into a DB, which gets leaked to the internet and then can be found/used by anyone? I don't think I follow u our reasoning. I'll also state that DNA is hardly the most public information there is, surely your face/skin color/size/other physical characteristics are more public?


This is the same gap between being seen face to face in a public square and having a high resolution 3D scan of your body.

We're ok with the former since the dawn of times, we're not happy with the later being digitally shared around the world.


Not secret but I would definitely consider it a PII (personally identifiable information), which makes it subject to regulations such as GDPR.


For those who are annoyed about the name of the site not being in the title: GEDMatch was phised a few days ago, then yesterday phishing led to the data exfiltration from the Israeli DNA site MyHeritage.

https://www.myheritage.com/


What does the GED stand for? Genetic ??? Database?

To someone who grew up in the U.S., GEDmatch sounds like a dating site for people who took a test in lue of completing secondary education.


One use of GED is for GEnealogical Data[base], or Genealogy Data.

GED files have been used for decades in genealogical circles at least. So I think that's what they're referring to?

https://en.m.wikipedia.org/wiki/GEDCOM, for example.


Additionally, I have always heard it pronounced like "jedcom" when referring to the files rather than G-E-D files.


Yes, that's right. You can attach genealogy information to a genetic profile on the site, and the link says "GED".


I upvoted you and FYI the word you’re looking for is “lieu”.


Much appreciated.


"GED" is the first three letters of the genealogy data interchange format called GEDCOM (GEnealogy Data COMmmunication).


I think it was like this:

Millions of GEDMatch accounts where opted in to share info with the police, without consent. Also, user emails where leaked, which lead to a phishing attack targeting MyHeritage users. 16 of them fell for it and they passwords were stolen.


I thought myheritage was owned by the Mormons.


Just out of curiosity, is there a reason for Mormons to especially care about their genealogy?


> One of the core tenets of Mormon faith is that the dead can be baptized into the faith after their passing. Baptism of the dead evolved from the beliefs that baptism is necessary for salvation and that the family unit can continue to exist together beyond mortal life if all members are baptized.

> Mormons trace their family trees to find the names of ancestors who died without learning about the restored Mormon Gospel so that these relatives from past generations can be baptized by proxy in the temple. For Latter-day Saints, genealogy is a way to save more souls and strengthen the eternal family unit.

http://www.pbs.org/mormons/etc/genealogy.html


That leads to my afterlife nightmare scenario.

I die bravely in glorious battle and am chosen by the Valkyries for Valhalla. One evening as we feast after that day's fighting, quaffing giant tankards of mead and boasting of our deeds, there comes a knock at the door.

Two young men in suits enter, and go to speak to Odin.

Odin then call for me to come over. He tells me that the young men are Mormons, and that some distant relative born long after I died (great-grandkid of a second cousin or something like that) has joined the Mormon church and has been busy baptizing the whole damn family tree.

Odin tells me I'm Mormon now, and cannot stay in Valhalla. I must move to the Mormon afterlife.

(Actually, the Mormon afterlife doesn't seem all that bad compared to that of most Christian or Christian-adjacent religions, in the sense that if you reject their teachings but still live a decent life you get a decent afterlife).


Mormon baptism for the dead is conditional - it doesn't automatically convert them, but rather the dead person gets a choice to accept that baptism or not.

But then again, while in Mormon theology the spirits are immediately sorted into paradise and "spirit prison" upon death, they can apparently communicate across the boundary between the two; and those in paradise can thus evangelize to those in prison, until they convert. So by the time they get their proxy baptism, they would presumably be convinced of its necessity.

(Although I never understood why that would even be necessary, given that by that time they already know, and thus don't have to believe...)

And yeah, Mormon theology is not what you'd expect from a religion that's so rigidly socially conservative. Between near-universal salvation and extreme Arminianism, it's really one of the most liberal among Christian denominations.


> those in paradise can thus evangelize to those in prison, until they convert.

So even the Mormons admit that having Mormons constantly trying to convert you for the rest of eternity is what hell is like... :D


The mormon belief of being able to preach and convert after death stems from new testament teachings in Peter that Christ preached to those in "prison".

And while many Mormons take the necessity of baptism (even if after death) very literally, it is important to understand that they also believe that anyone who missed the chance to accept a posthumous baptism, will get that chance during the millennium of Christ's reign on earth, pre-judgement day.

All of that is to say, Mormons aren't frantically searching their genealogy to baptise everyone for fear their ancestors will burn in hell. There is a belief that seeking out and understanding your geneology and then setting aside time to go to the temple is beneficial to ones spirituality and well being.


Valhalla is only good if you keep winning the afterlife wars!


Valhalla is nothing but a training ground for the forces of Odin. Once Ragnarök happens, they will die a final death fighting the forces of evil.

If you want eternal life, you want to go to Fólkvangr.


Ragnarök is the only afterlife war.


Sounds like The Saga of Biorn https://youtu.be/MV5w262XvCU


I believe the "if you live a good life you go to heaven" is a common tenet of many Christian denominations since the Vatican Council.

At least, I recall my religion teacher (a catholic priest, we have such a class in public schools in Italy tho they vary in content and quality) telling us that some decades ago.

You do not go to heaven if you're an atheist tho, as _denying_ there is something divine puts you in the bad list, sorry.


I mean does it really matter what the church says? The important part is what God actually thinks here and that seems to be very different depending on who you ask.


To be more precise, what matters is not so much what God/gods "think", but what they want us to do. In this case, the textual foundation for Extra Ecclesiam nulla salus is Mark 16:16: "Whoever believes and is baptized will be saved; whoever does not believe will be condemned." Assuming these really are the words of Jesus, they leave very little for interpretation, no matter what Vaticanum II says.


Only if your priest disallows other interpretations. Here people can disagree what constitutes faith. Many Christians believe that God is everything good, so if you share good values, it's thinkable you are effectively a decent Christian. But yeah, for Protestants faith is formality: if you only believe in these and these letters and remain a miserable sinner, you get a ticket to heaven.


These can not be the words of Jesus since the language of these words did not exist at the time (assuming a deity that doesn't express itself in yet unformed languages).


Is this better?

"ὁ πιστεύσας καὶ βαπτισθεὶς σωθήσεται, ὁ δὲ ἀπιστήσας κατακριθήσεται."

That's the closest we can get, although Jesus would have assumedly spoken these words in Aramaic, not Greek.

Source: http://bibletranslation.ws/trans/markwgrk.pdf


God would hardly allow the church to go around spreading falsehoods, would He? Surely the various Popes/Patriarchs/Grand Wizards are just a mouthpiece for the almighty and all of his confusing and inconsistent proclamations.


That's a fairly new development BTW, I believe 2005-2007. Before that, unbaptized "good" souls were collecting dust in limbo.


Definitely not on the Protestant branch of things.


There is an interesting sci-fi version of Mormonism's baptism of the dead & Tipler's Omega Point in Charles Stross's Accelerando: https://www.antipope.org/charlie/blog-static/fiction/acceler...

> The Church of Latter-Day Saints believes that you can't get into the Promised Land unless it's baptized you – but it can do so if it knows your name and parentage, even after you're dead. Its genealogical databases are among the most impressive artifacts of historical research ever prepared. And it likes to make converts.

> The remaining faithful of the Latter-Day Saints are correlating the phase-space of their genome and the records of their descent in an attempt to resurrect their ancestors.

> ...the panopticon-logged Net ghosts of people who lived recently enough to imprint their identities on the information age, and the ambitious theological engineering schemes of the Reformed Tiplerite Church of Latter-day Saints (who want to emulate all possible human beings in real time, so that they can have the opportunity to be saved).

That results in a a fun version of the simulation hypothesis where we're all simulated beings in some Mormon-Tipler Heaven.


Why not just baptize every human then?


That's what they're trying to do. In Mormon theology everyone who dies without a chance to be baptized must be given a proxy baptism by someone living, so they have a chance to accept the gospel in the afterlife. The goal is that this will eventually happen for everyone who ever lived. (Source: former Mormon.)


Send someone up to space each year and sprinkle water on earth, do a bulk lot.


Unfortunately won't work unless you flood the world, because Mormons only do baptism by full immersion.


They only need to wait a century or two then... and try to release more greenhouse gases if possible.


https://en.wikipedia.org/wiki/Feng_Y%C3%BC-hsiang#Conversion...

There was a Chinese general who supposedly did something like that using a firehose.


Even discounting the procedural difficulties, which would make such a baptism invalid to the church, it doesn't count without knowledge and consent.


How do the dead ancestors give consent in the current scheme?


Asking them in the afterlife, apparently.


Correct. Proxy baptisms are never considered to make someone a member of the Church, precisely because it is not possible for the earthly Church to confirm with a dead person that they have given their consent. It is merely considered to make the opportunity for giving consent available to the person in the afterlife.


Why does it require genealogical research, though? Can proxy baptism only be performed by living relatives? And if not, then wouldn't just knowing the name of the person suffice? Or, for that matter, wouldn't any way to unambiguously identify them?


In practice, you just need the name and birth year and maybe another detail or two. And a recent rule does require that members focus on their own ancestors.

But the point of the whole thing is actually to spend time learning and researching your family history. In other words, the literal posthumous baptism is not the point. That's the ritual. It's what to learn and do along the way of accomplishing the ritual that is the point.


I’m a Jewish atheist and the first time a couple Mormons knocked on my door and explained proxy baptism to me my first reaction was to be taken aback. But hey, may as well cover all my bases right?


It sort of addresses a fundamental issue with a lot of Christian religions that teach that people who never had a chance to hear about Jesus and be baptized automatically go to hell. There's a lot I dislike about the Mormon church and its doctrine, but the Mormon conception of the afterlife is quite a bit more fair than a lot of other religions.

Note: in Mormon theology, those that die and receive their baptism by proxy still get to choose to accept or reject that baptism in the afterlife.


> It sort of addresses a fundamental issue with a lot of Christian religions that teach that people who never had a chance to hear about Jesus and be baptized automatically go to hell.

This always struck me as one of the most stupid and illogical tenets as it's in opposition to the concept of loving and just God: why create millions of people who have no chance to meet the Gospel, and then automatically condemn them to suffer forever, just like that, for nothing? It really makes no any sense! And yet, the modern world lives on remnants of these ideas.


Most Christian denominations do not believe that those who are unaware of Christianity automatically go to hell. They usually say that it's down to divine providence and God's mercy, and that it's pointless to speculate beyond that, those being ineffable and all.


Pascal's wager-by-proxy.


There has been a bit of that. Although it is officially against church policy, some Mormons have baptized some deceased Jews, including Anne Frank:

https://www.nytimes.com/2012/03/03/us/jews-take-issue-with-p...


I feel like taking offense at this is not worth it. If they sincerely believe they are saving souls, and you don't, then it shouldn't mean anything to you.

Baptizing the dead seems silly and quaint, but Christians used to ask, how is it fair to send the unbaptized to hell that never had a chance to be saved? Mormons should get some credit for acknowledging the unfairness and coming up with a "solution".

I think it's a sad commentary on human nature that the Christian sects that don't believe anyone goes to hell at all are even more fringe and taken less seriously than Mormons.


>I think it's a sad commentary on human nature that the Christian sects that don't believe anyone goes to hell at all are even more fringe and taken less seriously than Mormons.

One reason they might not be taken seriously is that in the Bible Jesus directly talks about people being in Hell.


>the Bible Jesus directly talks about people being in Hell.

Jesus talked about people being in Gehenna (burning trash dump outside Jerusalem), Hades (Limbo or Paradise, Sheol in Hebrew) and I think Tartarus (deep pit). Tartarus may be OT only, I can't recall ATM.

All those terms, each with it's own intent and meaning, were later rolled into Hell (which received a new meaning, one different from any of the original terms). This was eventually codified during one of the Ecumenical councils (1st council of Nicea?)


I don't really think the name matters; Jesus wasn't speaking English. It's the concept that matters. I think Matthew 25:46 covers the concept well:

> Then they will go away to eternal punishment, but the righteous to eternal life.


>I don't really think the name matters; Jesus wasn't speaking English.

Diction mattered a great deal to Christ. Gehanna (Hebrew: Valley of Hinnom; גיא בן הינום) was a location in Christ's time, that was likely associated with burning, destruction and loss - things that one might be expected to feel in the absence of the Creator.

Hades was where all dead went and remained until the day of judgment. Christ's reference to it as Paradise implies it isn't a place of suffering. Catholicism's Limbo implies it is a place of waiting.

The modern notion of Hell as a location dedicated to the eternal suffering of man, is quite different from either of those places.


Jesus said "Then they will go away to eternal punishment". That seems clear enough to me that there's some place (not necessarily a physical place) where people will suffer eternally. I think that covers the basics of the Christian view of Hell. Whether it's associated with burning or not seems a lesser matter to me.


>That seems clear enough to me that there's some place (not necessarily a physical place)

Did God create this place?


This doesn't seem relevant to the original question of whether the Bible says Hell exists or not. People can agree that something exists without agreeing how it was created.

One view[1][2] is that Hell isn't really a place, but rather a state of being, and the primary suffering of Hell is the separation from God[3]. God didn't create it, rather we ourselves created it by separating ourselves from God through sin.

[1] https://www.stbensduluth.org/blog/fr-joel-hastings/who-creat...

[2] https://en.wikipedia.org/wiki/Christian_views_on_Hell#State

[3] https://www.vatican.va/archive/ccc_css/archive/catechism/p12...


I don't think that is true, see for example: https://www.npr.org/2020/03/31/824479587/heaven-and-hell-are...


>Bart Ehrman says the ideas of eternal rewards and punishments aren't found in the Old Testament or in the teachings of Jesus.

What about Matthew 25:46?

> Then they will go away to eternal punishment, but the righteous to eternal life.

That article seems to assert that Jesus taught the soul cannot live apart from the body. There are various other quotes from Jesus contradicting that. John 14:1-3:

> Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.

John 18:36:

> Jesus said, "My kingdom is not of this world. If it were, my servants would fight to prevent my arrest by the Jewish leaders. But now my kingdom is from another place."

Luke 23:43:

> Jesus answered him, "Truly I tell you, today you will be with me in paradise."


In the gospels Jesus is a guy who walks around talking in parables and analogies 100% of the time. Taking his sentences literally and building an elaborate theology involving an eternal lake of fire doesn't seem true to the spirit of things at all.

Nevermind that the gospels themselves are copies of copies of texts that were written long after this man lives.

Having been brought up evangelical Christian I just find the whole thing kind of baffling and a little enraging now. What I was taught was in scriptures isn't, really. If you read them again without the template of the interpretation given by the church there's dozens of different ways to interpret that look nothing like Christian (protestant or catholic) theology.

If I weren't an atheist now I'd at least be some kind of heterodox non-Nicean blasphemer, because it's absolutely confusing to me that anybody can take the council of Nicea and related councils seriously.


Sure a lake of fire is an analogy. But "eternal punishment" seems pretty clear and not an analogy.

Taking parables literally obviously we shouldn't do. But interpreting them and building a theology around them seems to be exactly what Jesus wanted. Jesus even interpreted some of them for his apostles (Mark 4:3-20).

Jesus never said we should take scripture as our sole source of truth and ignore other sources. Jesus gave the power to guide the Church to his apostles, and specifically Peter (Matthew 16:18). We can even see the apostles using this power in Acts 15 to establish doctrine. A good explanation of this is in this video[1]. They can continue to use this power at the council of Nicea.

[1] https://www.youtube.com/watch?v=jJCbCs-y1_k


> Baptizing the dead seems silly and quaint, but Christians used to ask, how is it fair to send the unbaptized to hell that never had a chance to be saved? Mormons should get some credit for acknowledging the unfairness and coming up with a "solution".

Mormons were hardly the first Christian or Christian-adjacent group to come up with a solution to that, though perhaps one of the earlier groups to adopt a single solution as a firm doctrine rather than leaving the question doctrinally open with multiple possible solutions proposed and not condemned by authority.


I grew up with evangelical christian teaching (one of the 2 big christian Churches in northern Germany) and as far as I understood in their version nobody goes to hell.


I don't know, I'm neither a Christian nor a theological expert, but I was thinking of these:

https://en.wikipedia.org/wiki/Primitive_Baptist_Universalist

...who are described as taking Calvinism to its logical conclusion.

It says "Bill Leonard estimated in 2011 that there were 1,000 or fewer PBU adherents in total, concentrated in 20 counties in Appalachia"


Ha! Get a load of this guy, caring about people outside his family /s


That's the whole point; they intend to baptize everyone living or dead, and theoretically even the dead get to decide whether to accept.

Genealogy is a side effect of this, I have the vague impression that they need to know who you are to baptize you; however, everyone on the planet is a member of the same "family".


That is a correct impression. A name, date, and associated place, with all three assumed to uniquely identify an individual in most cases, are required to perform the ordinance. Most typically, that's a birth name and a date and place of birth, date and place of death, or date and place of marriage.

If it turns out that there were two people with the same name born in the same town on the same day... well, the angels will help figure that out later.


I think they actually try to in what they call baptism for the dead.


That's such an incredibly rude and conceited practice.


Oh, nonsense. Proxy baptism doesn't make you a member. That's not what they believe. Century after century Catholics taught that if your loved one had the misfortune to die before baptism, no hope. Eternal misery, because Christ said baptism was mandatory. Mormons say, well Christ was right of course but certainly not cruel, so the good news (gospel) is that if you don't get baptized before death for whatever reason, someone will take care of that formality for you so you can still choose in the next life whether you want it or not. If you decide you want it, then you were officially baptized. If you don't want it, you weren't baptized. (Someone else was, offered it to you, and you declined.)

If buying your ticket for a party that requires a ticket but you don't have to go to if you don't want to is "incredibly rude and conceited", you would have good reason to condemn all of Christianity similarly for Christ's claim that he paid the mandatory price for your sins, buying you a ticket to heaven that you'll need (Christians claim) but that you can either accept or reject, as you wish.

Mormons offering to extend the deadline for you to decide into the next life is hardly "incredibly rude and conceited" IMO.


My life is none of their business.


In addition to (and in conjunction with) the other comment about baptism for the dead, it is believed to be a fulfillment of an Old Testament prophecy of pointing "the hearts of the children to their fathers" before the end of the world. Only names and some important life event dates are required for baptisms, but there is also an emphasis on learning much more about them if possible.


Probably a practical and financial reason such as the Catholic Church not allowing priests to marry and have children as a form of preventing priests passing on accumulated wealth or power to their offspring.


That's a pretty strange claim, do you have any evidence for it? Priests are not exactly wealthy, in general.


they're not now. but christianity is an old religion.

after it became the official religion of Rome their aristocracy increasingly took up bishoprics, wich were much more powerful then, and acted as great lords do. paul johnson's a history of christianity is a good read if you want to know (lots and lots) more


FamilySearch is the Mormon site.


Adding that FamilySearch hasn't joined the other genealogy sites in their DNA Addictions.

&

MyHeritage has clearly lost their way. They've all but abandoned their research role (their once-excellent post 1940 records are nearly unsearchable now) to one obsessed with DNA & image gimmickry.


Nope, you're thinking of Family Search that is owned and operated by the Church of Jesus Christ of Latter Day Saints.


And possibly Ancestry.com, they don't have ties with the church per say, but they do have very strong ties to Utah.


As a result of this breach, all user permissions were reset, making all profiles visible to all users

This seems like the opposite of how a sensible permissioning data model should work.


“But A/B testing showed more ‘user engagement’ when you default to public”


I think it's an older issue. Before it was sold, GEDmatch was ran by several part-time developers. It was running some old PHP 5 version the last time I checked. In general I advise to be very sceptical of amateur-ran genealogy sites - I know of at least 3 search engines with obvious SQL injection issues (which allow me to run better queries, but still). All of the major commercial sites had some sort of leaks as well (I'm not sure about FamilySearch).


Who are you quoting there?


wooosh


I thought the exact same thing when I got the email. I would have much preferred a permission reset resulting in profiles being locked down tightly.


Can someone explain the potential short to medium term fears of one's DNA leaking? My initial assumption is that it would be less of a problem compared to nearly any other personal data leaking. Like it certainly sounds creepy, but credit card or other financial data being stolen presents a huge headache and creates a lot of work.

I understand that in specific instances, for example when paternity is in question or if a person is hiding from someone this information getting out could be catastrophic, but that applies to such a tiny portion of the population. So for most people, what is the downside to some random individual knowing the country of origin one's ancestors are from or that they might have a genetic predisposition to heart disease? It isn't like any reputable company is going to be able to use this information against us.

Plus in the long term there are likely going to be ways to get this information directly and almost instantaneously from any personal interaction you make since we can't really stop ourselves from shedding our DNA wherever we go.


My hunch is that if this information is used against you, you'd never know.

First scenario that comes to mind: The insurance company that gives you an extremely high quote because you come back as "high risk" from a 3rd party company that they use to vet applications, and that 3rd party company uses your genetic predisposition for a condition.


This requires the insurance company to be doing something illegal and for it to really cause damage all their competitors have to be doing it as well. If this ever becomes widespread, it would be quickly obvious when a large number of ostensibly healthy people are given quotes that match their genetic profile but not their medical history. I'm just not sure that is a reasonable fear.


I think insurance companies aren't above doing anything illegal, especially if it can not insure you/drive you away with a high quote if it saves them many years and millions and millions of dollars covering someone's care for Huntington's or chemo for breast cancer or some other terrible disease for which someone is genetically predisposed.

The punishment for violations of the Genetic Information NonDiscrimination Act can be up to a million dollars in fines and some jail time. It is exceedingly rare for corporate officers to go to jail for acts of corporations, so likely violations would simply be fines. Cancer is expensive to cover (less so for insurance companies working with hospitals, much more for you and I), and the fines are relatively small, with the chance of jail time exceedingly small. I am unaware of anyone who has been prosecuted under this Act at all. I did a cursory search and didn't see anything.

The forgoing leads me to believe that like many crimes that have low rates of prosecution and relatively small fines, it would probably make sense for a corporate board (or series of employees acting under mutual light peer pressure) to use DNA information as an input into their actuarial tables.

Additionally, it would be difficult to spot clusters of people who are otherwise healthy with high insurance quotes. Even if you had the actual insurance quotes, getting peoples' medical information, especially in bulk, is extremely difficult because the aggregators of such information are typically bound by HIPAA.

All that to say, I think this is an extremely reasonable concerned and I would be shocked if companies didn't already use DNA information in some form, even if that form is as some input to a machine learning model, but I'll demurr on that subject because I know little about it.


There are a couple problems with this line of thinking. First, a lack of known cases doesn't mean that this is necessarily hard to detect or that it isn't being prosecuted. It might also simply not be happening. That seems to be the most likely scenario given how hard it currently would be to secretly acquire and use this genetic data.

Also you don't need to have a massive amount of HIPAA protected data to be publicly available for someone to notice. There are plenty of independent insurance brokers who serve as middlemen between consumers and the insurance companies. These people have access to all the medicals and usually end up having a decent understanding of how that translates into insurance rates. A drastic change in how insurance companies rate risk would be quickly noticed by these brokers. Right now if a broker receives a particularly bad rate from a specific insurer due to a quirk of their actuarial numbers, they will often turn around and apply to a competitor. That means any single insurer using this information wouldn't necessarily do that much damage to end consumers. It also means that any single insurer who did this would quickly get a reputation for providing rates that look unexplainable on the surface and it won't be long before people start asking why. Once again, I just don't think this is a realistic scenario.


If the data is managed by a company that isn't in the healthcare industry, HIPPA doesn't apply. An insurance company, even a health insurance company can purchase non healthcare data from an analytics company.

It wasn't HIPPA protected when it was on my heritage, and it won't be healthcare data when it's eventually leaked and resold.

If you don't think legitimate companies are interested in buying that data, look around at the market for our password breach and identity theft data. There's a brisk, legal trade.


I never mentioned HIPAA in the context you are implying. I was simply saying it won't protect the malicious actors from being discovered.

> look around at the market for our password breach and identity theft data. There's a brisk, legal trade.

If it is so easy to acquire this data legally, do you want to point to a business from which one can legally purchase "identity theft data"?


I read about a "threat intelligence" company on here the other day who got hacked for all their breach data. Not all of it is super public, and none of the public dumps are in a tidy package where you can associate users in one breach with users in another breach. Sorry I couldn't find the name of the company.

But there are more than a handful of "threat intelligence" or OSINT providers. I'll let you Google it for yourself.


I am also extremely dubious of this risk. At least in the US, a conspiracy of this sort would require hundreds of potentially-disgruntled employees to resist getting rich from whistleblower rewards.


Or half a dozen engineers building a new "AI-driven" risk evaluation service with nebulous inputs from their manager.


Except these don’t regularly turn up fraud. Wells Fargo kept it going for years. Bernie Madoff kept it going for years.

People knew about both.


There are also laws against looking people up on social media in my country, but in most countries it is legal. 70% are estimated to do that as part of the hiring process regardless of laws.

> An employer who looks at an applicant's Facebook page or other social media posts could well learn information that it isn't entitled to have

True, but you cannot unlearn things...

So the believe in laws prohibiting information spread might need rethinking.


Mix the DNA info into a machine learning insura-bot and you'll never be able to extract the evidence.


> This requires the insurance company to be doing something illegal

The problem with laws is that they can be changed relatively quickly while your DNA, and many other things, can't.

Afaik pre Hitler Germany already had a pretty extensive personal registration system that included thing like birth date, sex, _religion_... Which became very convenient later on. Once the data is out there you have to trust the current government and companies as well as all their successors for your entire lifetime (and potentially more in case of your DNA).

It already started btw, some insurance companies give you discounts if you accept to wear their smartwatch to prove that you exercise, it's just a matter of time before it slowly extends to other things.


It doesnt require them to do anything illegal... Pretty sure that they can already buy that information


For what it's worth, that is illegal in the USA at least. Genetic Information Nondiscrimination Act passed in 2008.


Which covers health insurance, not life insurance and others.


I may be one of the people who lost DNA in this breach.

I am not currently worried about anything, but I also know that I don’t know everything DNA can be used for. My greatest concern consists of things some smart crook might think of doing.

While a reputable company might not use the DNA for fear of getting sued, they might use a crappy contractor who does not care.

Banks care about information security and take it seriously. They use a crappy contractor called Equifax which doesn’t.


Think bigger. Insurance. Loans. Financial predation. The right to bear arms. Social stigma created by incumbent politicians wishing to divide their people over meaningless differences.


This is a side note about your example, but you say "Banks care about information security and take it seriously. They use a crappy contractor called Equifax which doesn’t." If banks send important information to a contractor which they're unable to verify takes information security seriously, then it's hard to see how the banks can be said to be taking it seriously.


They take it seriously until the liability shield of contracts and separate corporate entities takes over.


this presentation outlines the kind of terrible attacks that could be based on your DNA in the near future https://youtu.be/HKQDSgBHPfY

tldr, CRISPR allows targeting bioweapons at specific individuals.


Thanks for the link to that video. I don't have the time to watch it now, but I will come back to it later. Although on the surface, specifically targeted bio-engineered weapons seems like a silly fear for most us when bullets are so cheap. If someone wants me dead, I don't think any difficulty accessing my genome is going to be what stops them.


The choice of murder weapon obviously has more to it than whether bullets are available. The US has the most guns amongst its citizenry than any other on the planet yet a large percentage of homicides there are stabbings.

Availability, ease of use, likelihood of success/failure, and ability to be detected prior to and hence defended from, and for it to be detected after the act (who wants to be caught?) would all be considerations that may make it far more viable and attractive as a method, let alone the cost - bullets may be cheap but guns aren't.


Unless they want your demise attributable to "natural causes"

Yeah, no one is going to go to all this trouble for some schmoe from the middle of nowhere. But imagine something like regime change as a motivation.


Well, as a non-criminal thinking about it for a few seconds, various types of blackmail come to mind:

- you are the biological parent of this person who's looking for you, and if you want to stay anonymous…

- your husband isn't the father of his children, and if you don't want him to find out… (follow-up: both parents know but don't want the kids to.)

- you've been living under someone else's identity or a fake name…

- your ancestor was a slave-owner or Nazi or something and if you don't want the people you care about to know…

- your sibling isn't actually a blood relative, and so now the inheritance is in question…

These are all probably extremely rare cases, and were likely already known before or immediately after the test, but it's cheap to spam out the emails to see who's still trying to hide it. In a large enough population, it's still a worthwhile criminal enterprise. And their rarity makes them all the more vulnerable to blackmail. Where before it would have taken real legwork to find them, now it's just some data processing and emailing.

A similar concept is like those annoying ads for semi-legal websites where you can look up someone's criminal history, there could be a similar thing to look up someone's biological records. There might be a dating app in there too: filter for infertility or rare diseases?

There are plenty of other things, from the mundane to the exotic:

- having your medical care made more expensive or being denied insurance.

- being wrongly accused (and even convicted) because crime scene DNA was close to yours or a relative's.

- hiring based on genetic factors as in Gattaca.

- individually targeted attacks like the peach allergy from Parasite.

And again, that's off the top of my head; criminals are much more creative.

The key point that makes DNA (and other biometrics) even worse of a breach than credit cards or bank statements is it cannot be "reset."


Nothing.

Absolutely nothing.

The DNA records aren't the type that can be used to clone you, or frame you with some kind of non-existent DNA copying machine.

They are autosomal records. (or similar genealogical, or non-medical, types)

The people spinning fantastic fairytales about how the jackbooted thug of big brother is going to crush your throat probably don't even know what autosomal means and no amount of eduction will convince them.

I encourage everyone to submit their Autosomal DNA to public databases. You may bring closure to someone who has been or known a victim of a horrific crime and there is no risk to you.

You have at least one reply about insurance companies using this information to screw you.

1. This type of information is practically useless, actuarially, and

2. It has been illegal for them to do so for many years.


> or frame you with some kind of non-existent DNA copying machine

I can imagine the hacker swaps your name + account metadata on the data warehouse website with the DNA content of a murderer. Then you get a visit from the police just like you were being SWATted.

The mismatch is only found if the police bother to verify by doing a fresh DNA comparison (which they might, but only if they can't convince you to admit guilt first).


A hacker can swap my name + address with a murderer right now without access to my DNA.

All of the hypotheticals in this thread (except for the CRISPR future superweapon) can happen right now without the need of a DNA leak: the US had an explicit system of racial discrimination encodes in the law until the mid 1960s without the need of 23AndMe. My insurer already has data about my genetic diseases and pre-conditions from blood tests I did as a baby.

I want to be worried about the leak, but I really cannot think of any consequence that's not a crazy sci-fi hypothetical or something that can be done more easily without access to the DNA database.


> there is no risk to you.

There is always risk. You probably don't see it yet just like only privacy-forward folks thought Facebook's encouragement to "share everything" publicly (circa 2007) foresaw the problems that would commit 10+ years later.

The small benefit of closure to a stranger who has already dealt with the grief of loss is not worth it for me. It depends on your personal value system.

> It has been illegal for them to do so for many years.

Laws can change. Just like I always assume a company can screw me after I agree to a ToS (eg. through a pivot, an M&A, or a bankruptcy), I assume any law can change with enough societal acclimation.

Also, laws are relative to where you are. If you try to visit another country, expect that they might have access to your leaked data. Hopefully you never want to work as a spy in the future.


Exactly because there is always risk, when it is small - people say there is no risk.

Lots of things can happen and could have happened but never did.


> Exactly because there is always risk, when it is small - people say there is no risk.

This is analogous to the definition of "literally". It was misused so much that a new second definition for the word is close to the opposite of the original definition.

It's still worth mentioning the nuance at least occasionally.


If you seriously worry that much about far-fetched hypothetical scenarios it simply means you're privileged enough not to have immediate problems that affect you today.


I agree.

But the unprivileged benefit from the privileged identifying longer term issues.


Sorry you're being downvoted for raising excellent points.

Watching The Genetic Detective[0] series has really shown what a great resource a searchable DNA database can be for people like CeCe in helping to solve violent crimes... even when they have been "cold cases" for so long.

[0] https://abc.com/shows/the-genetic-detective


As someone who works in cybersecurity, it's always hard for me to interpret PR language like "orchestrated through a sophisticated attack". This could be aimed towards non-savvy readers meaning basically anything or it could be accurate and describe a nation-state (although I don't get the feeling of a sophisticated nation-state actor here).

The DoJ used similar wording when prosecuting Aaron Schwartz for using Python scripts to glue together "curl" calls.


As someone who works in cybersecurity, it is perfectly clear to me that victims of attacks don't want to sound inept in their announcements so they ALWAYS say attacks are "sophisticated," "orchestrated," or "advanced." Nobody is going to say "we were hacked because we lack even basic security precautions." Instead, everything is an "APT."


Point of order: the victims of the attack are the million or so people reading about it in the news.

The targets of the attack are doing their level best to control the narrative by spinning their attackers as extremely sophisticated so they don’t end up with a million or so people holding torches and pitchforks outside their offices.


Well, targets are also victims to some degree, but I get your gist. I would take it a step further: for identity theft the company that fails to verify your identity before reporting false info to a credit agency is at fault - for libel with damages. My SSN is not a form of authentication and using it as such should be a crime.


Speaking of misleading cybersecurity language, note how you used the term "nation-state", which is a word that indicates a specific subset of countries and is not just a fancy synonym for "country".


That's an existing problem that hasn't been solved in geopolitical meatspace. I don't expect it to be solved in cybersecurity first.

That said, for my understanding: which political bodies are countries but not nation-states? Is this a reference to places like Singapore and the Vatican, which are probably more accurately labeled city-states?


https://en.wikipedia.org/wiki/Multinational_state

> Present-day examples of multinational states are Afghanistan, Belgium, Bolivia, Bosnia and Herzegovina, Brazil, Canada, China, France, Ethiopia, India, Indonesia, Iraq, Madagascar, Malaysia, Mauritius, Montenegro, Nigeria, Pakistan, Philippines, Russia, Serbia, Singapore, South Africa, Spain, Sri Lanka, Suriname, Switzerland, United Kingdom and United States.


I think you interpreted this dishonest PR spin just fine.


Unless they come out with details of a convoluted deeper infiltration, escalation of privilege, and careful exfiltration of data over a period of time to escape detection I wouldn't buy the PR bs.


I think the metaphor of "orchestration" refers to, as an analogy to actually composing/arranging music for an orchestra, getting lots of other entities to do what one entity specifies that they do. Amplification of control. Not "basically anything."

"Sophisticated" I suppose means above-average in complexity, which indeed could be "basically anything."


Just wait until Krebs on Security talks about it.


Krebs on Doxxing


Often, security bulletins will use the word sophisticated when describing multi-step attacks.


Step 1: Type in stolen username

Step 2: Type in stolen password

Step 3: Click log in button

Step 4: ( •_• ) ( •_• )>⌐■-■ ( ⌐■_■)

Step 5: I'm in

One example of a "sophisticated" attack


Now you're making me wonder how many places the sunglasses meme in unicode could be used as a valid password.


By the way, it's Swartz


On the subject of nation-states, they want the data to help out spies


To be fair, curl is a nightmare of pedantry without something like postman to deal with it all for you. BTW, when did postman come out anyway?


Postman is nice and ergonomic!

curl is great if you already have the command crafted. My suspicion is that the Python script scraping a web page for URLs/IDs which then ran a curl shell command which saved the resulting document to the file system.


If by which you mean it adheres to the specs and does what you tell it to, then sure?


This is the same level as having a breach of biometric data.

With password/payment/location breaches you have the ability to change what you entered as to invalidate/outdate the data which was stored.

Having your biometric/genome authentication data stolen or made public will be a nightmare.


No, not really.

There's no practical way to protect our genomes in meatspace. We're constantly shedding DNA into the environment. Hair, skin, saliva, etc. For example, an adversary can just tail us to a coffee shop or restaurant, and take a utensil or straw or napkin that we've used. And then submit the sample using a fake name, as investigators often do.

Edit: Those are excellent comments about scale. But generally, if you don't want to publicize your genomic data, just don't send in a sample.


But you can't do that to a million people, only to individual targets. Economic scale matters in a lot of evil plots.


Just wait until these fancy "smart" coffee cups with built-in nano-labs become ubiquitous.


If we have nano-labs then we can also have nano-obfuscation-labs to protect our privacy - randomly mutate or CRISPR any DNA we shed


Before that happens, I'm guessing that full DNA sequencing at birth will be a legal requirement. Like footprints are now.


Holly... You're right. This will happen. To an over-arching state this is the ultimate modus.

  INSERT INTO Citizen(dob,ssn)
  VALUES 2030-10-28, sha(atgcaatgcatcgc..)


hashing (sha) is not very appropriate since you're not likely to ever reproduce exactly the same base pair sequence for the same person.


What could you do to a million or a billion people that would make life a nightmare for them if their biometric data was stolen en masse?


My concern is not what can be done today, but rather in 15 years.


Discriminate against them based on medical conditions, persecute them based on "impurities" (think Hitler & Jews or China & Uyghurs), make them targets of fishing expeditions for unsolved crimes, etc.


That's a lot more work, and requires far more dedication and resources, than just picking up the data from a dump on the black market.


It could become very interesting for a fascist state.


According to GEDMatch, they do not store genomes.


I waited for this. Sorry to all that are affected, but maybe this is a sign for others, not to give their DNA to a random company.


And also not to be related to someone who gave their DNA to a random company.


Yeah, just like people stopped using their real identities on the net where there is absolutely nobody with an axe to grind for trivial issues.

Sorry for the cynicism. What is even worse, people actually using these services create expectations towards everyone smart enough not to do that. Of course, that would mean your near relatives have to be smart enough not to use these services either...

Now any health insurer could use this data to identify high risk genetic defects...


Isn’t it illegal to use DNA data for purposes of health insurance? How would insurance company be able to use it? Companies like kaiser run both hospitals and insurance, yet they can’t use your full medical history when determining your insurance risk.

The bigger issue imho is companies using biometrics as a secure authentication, but at least in USA that’s going to be no worse than SSN mess.


Legislation is sensible and in larger insurers this promise will probably be kept. But if the info is available, people will look it up. Long time disease risk is interesting to many people.

If you leave your door open, people are still not allowed to steal you things. Do you leave your door open?


Good way to identify people using cover. That's got some value to people that can perform these sorts of exfiltrations.


Rather why such companies are even allowed? They are literally privacy invasion, even if by ignorance.


My DNA is in this breach and I couldn't care less.


Why should they care aboit it being released though?


One thing I’m thinking about: this is probably an inevitable future. That we like it or not technology is going to be more and more intrusive. If not our generation, the next one, or the one after.

We’ve seen that short-sighted laws have caused more harm than good on the long-term. Like the war on drugs.

Knowing this, is there a future where we can lose privacy but still live a good life? And what can we do to get there?



The cost of that is prohibitive except for very particular cases. On the other hand, even tiny devices have powerful computers nowadays. We don't need 3rd party cloud.


The way GEDmatch works you can enter any "kit number" and get a long list of matching people which has their kit number, name, email and some other basic information.

It sounds to me like hackers just managed to traverse the entire database to hunt for emails. Which is not exactly hard given how the site works.

Most kit numbers seem to be a letter and 6 numbers so not exactly hard to brute force either. You don't even have to get that many right as for any hit you might get a list of 1000+ people and use their kit numbers to get even more.

You might say that's a terrible design security-wise but that's what makes GEDmatch great for researching who you're related to. They'll either have to degrade the experience or be really stringent about rate limits and so forth.


I can’t believe this is a website. It’s essentially a rolling data breach.


So they sent an email to their users that states:

>We can assure you that your DNA information was not compromised, as GEDmatch does not store raw DNA files on the site. When you upload your data, the information is encoded, and the raw file deleted. This is one of the ways we protect our users’ most sensitive information.

This is kind of BS right? It's encoded... not encrypted.


Presumably. However, if it was a PR drone who wrote that, it may or may not be accurate as to whether or not it was encoded/encrypted.

I would just assume that it has in fact been compromised though.


Or at least a summary version of it with all the data they felt was relevant to keep... so everything we currently know to be important.


I would hope that it means, “some data is extracted to a format that can be used for particular operations that the service is doing, but not others that are possible with the full DNA”. Sort of an index.

Of course, it would still mean stolen data could be used for the same operations (and some others) if someone figures out the encoding, or data can be copy-pasted where it doesn't belong.


This seems very odd. These sites add features over time when new patterns are discovered, so I'd doubt that they delete any parts not used today because they might be useful in the future...


This is why I’ve been putting off getting my genome sequenced. One breach and it’s out there forever.

I’ve heard good things about nebula[0] as a way to get an anonymous genome but have yet to be motivated enough to take the plunge

[0] https://nebula.org/whole-genome-sequencing/


Nebula is definitely an interesting entry into the market. There's also Dante Labs[0], which often offers 30x whole genome in the 200-300USD range. You can download all your raw data (including FASTQs, h37-aligned BAMs, and VCFs) from AWS. There are some quality concerns (and they use BGI instead of Illumina sequencers), but at that price it's tempting to do Dante and Nebula as a check on each other.

Dante also has what seems like a pretty good privacy policy, including an option to destroy your saliva sample and delete all your data[1]. Obviously you still have to trust them, but it's a step in the right direction.

There's a good Facebook group for customers of both Dante and Nebula[2].

[0]: https://www.dantelabs.com/

[1]: https://us.dantelabs.com/pages/privacy-policy

[2]: https://www.facebook.com/groups/373644229897409/


> including an option to destroy your saliva sample

Until I read that sentence, it honestly never occurred to me they would keep that around. The data, sure. Biological samples? I just assumed they would be disposed of after use.


Ever heard of HeLa cells?

https://en.wikipedia.org/wiki/HeLa


RadioLab did a great episode on Henrietta's story

https://www.wnycstudios.org/podcasts/radiolab/segments/91716...


A sample can be used for multiple analyses. For instance, a customer might pay for autosomal DNA analysis and later want to pay extra for mitochondrial DNA analysis. If the sample has been destroyed, no problem just send in a new sample - unless the subject has died in the meantime.


Collect it all.


No reason to discard it, better sequencers are always around the corner


Is it strange to suggest discussing anything on Facebook, given how little privacy is afforded to users?

I find it just a bit weird that products that customers recognize require privacy as a core tenant would also just head on over to Facebook to add new, targeted meta to their verified Facebook profile.


agreed w your observation; yes it's strange / weird, almost unfathomable.

also, in a genuinely non-pedantic, "aiming to help and educate, not nitpick" way, may I offer this tidbit:

tenant: legal inhabitant / renter / occupant

tenet: principle or belief


Pseudononymously getting yourself sequenced is the way to go, but if enough relatives have their genes leaked under their real names, piecing together family trees isn't difficult.

One half-hearted option is to order a kit "as a gift" from one of the major sites and register it under a pseudonym. You're taking a risk that they're not keeping track of which kit serial number is shipped to which shipping address, and hoping the timing of the order can't be too easily correlated with the serial number.


Regardless of their policies, they still want to store it themselves and put it on the Internet.

I am hoping that someday there will be a sequencing company that will mail me a drive containing the only copy and destroy the sample.

I'm not worried about a sophisticated attack on my individual sequence but I suspect most of these services are or will be targeted by advanced and persistent attackers.

Call me paranoid but I don't want my genome in an internet connected database (though I am very curious to see it).


I wonder if there's some way to do testing on a walk-in basis, in a way that would allow transparency re the lack of sample and data retention.

So a customer walks in, provides a sample, and walks out with data on a thumb drive. And perhaps also with the module that was used for the analysis.


That would obviously more expensive than the $100 sequencing a lot of people are looking for, but for very privacy conscious people this could be available right now with a MinION[0] that's already in the $1000-2000 range, if you really want to take the whole device with you.

[0]: https://nanoporetech.com/products/minion


Wow, that's better than I expected! So maybe a resale market could develop on Craigslist or whatever. Buy one, get your data, clean and wipe it thoroughly, and then resell it. Maybe the refurbished price would stabilize at $500 or whatever.


There are some caveats with that though (some of which I just found out after some digging):

- You'll probably need more than one flow cell (which is used up during sequencing) for a human genome

- The flow cells make up the bulk of the price, costing ~$800 in single unit quantities

- You have to send in used flow cells for refurbishing (which is how they can make them as cheap)

So the $1000 is more or less already the refurbished price.


I wonder how fast the flow cell price will drop. But even at $1000 I might be tempted, except that I'm so damn old, and never (as far as I know) had any kids.


While it mostly comes out to the same, I doubt the price will drop much, but rather they will release a newer iteration of flow cells with slower degradation or more redundancy.

There also doesn't seem to be any significant competition, as Oxford Nanopore has a very broad patent portfolio surrounding their tech.


This is not meant to be confrontational in any way: what are the risks of having your genome exposed?


Primarily my concern is what it will be possible to infer about a person (or what some people think they can infer) from the genome not just now but in 40 years.

The history of science and politics are filled with ugly chapters of people committing bad acts based on the ancestry of other people.


And you should trust that company or government based on what?


I have no argument against more paranoia, but my curiosity is such that I'm willing to take some risk.


Is there any law/rule stopping me from getting your DNA and getting it sequenced? Other than most people wouldn't want to pay to get that done? Collecting your DNA would be the hardest part of that, I guess.


From an ethics standpoint their's something to talk about here...

From an individual standpoint I really don't care about someone out in the public knowing my genome. It's not like I store my passwords on my genome, how is this information going to be used against me?


One example might be the BRCA gene mutation. It gives you a higher chance of breast cancer and is typically associated with Ashkenazi Jews.

I'm sure your insurer would be interested to know if you have it, and that potentially your children are at an elevated risk.

Unfortunately there might be people interested in the ethnic association as well.


You got a point, but from a different angle is it ethical to hide your medical data from a company that may end up paying all your medical bills? It's almost like how people hide finances, you hide it because you want to do something unethical.

If I was jewish, I feel that right now I would just be slightly worried for myself. In general I wouldn't be too worried at all. I would, however, be more worried for my jewish kids, they may have to deal with that stuff in the future.

Although I would worry, I would question whether my worry is based on ethical grounds as that part is not clear.


I'm the founder and CEO of Nebula. I think in the not too distant future, everyone will get whole genome sequencing as standard of care. We think it's important to set up the privacy frameworks today around storing and sharing access to DNA. It's interesting because all of the risks of having your DNA data out there are not fully understood yet. And, as a consequence, legislation hasn't caught up to the technology. Should life insurance companies be able to use your DNA? Should schools be able to use it as an admittance criteria? Well, right now the law isn't stopping them from doing so. This hasn't been a huge problem today because, if you're really concerned about DNA privacy, you just won't buy a DNA test. But, sooner than later, you'll need genetic testing to get the right medicines, optimal treatments, best diagnostics, etc. Once whole genome sequencing makes the transition from consumer use cases to clinical ones, many users will be faced with choosing between their health and their privacy. We don't think that's a fair choice and think we need to start working on mitigating the privacy risks today.


It's kinda sad that the genome sequencing machines need to be fed loads of genomes in order to offer cheap prices for customers. You can't just buy one for home then use it a couple of times to sequence your family. That'd be most privacy preserving, but the fabled 1k whole genome prices are (currently) only available in high throghput machines. OTOH it's also better because that reduces the nonconsensual sequencing.


The federal government could maintain a central database containing the DNA of every citizen. Submitting a sample might be incentivized by barring people from, say, receiving social security, disability, government backed mortgages and student loans, food stamps, tax refunds, and other federal benefits if someone doesn't comply.

The National Institutes of Health, the Centers for Disease Control, the Central Intelligence Agency, the National Security Agency, the FBI, DEA (Drug Enforcement Agency), ATF (Alcohol, Tobacco, and Firearms), ICE, CBP, and DHS (Department of Homeland Security) could then mine the database for insights into disease, epidemics, crime, intelligence, and so many other purposes. Just imagine the possibilities.


In a perfect world, sure, but in the real world this would obviously be ripe for misuse. Hard to tell if you're being serious or not.


Why would DNA have anything to do with crime?


I am not an expect, but it seems like DNA is responsible for around 50% of the personality variance between individuals. Note that the variance within groups is an order of magnitude bigger than the variance across groups, so there aren't super strong ties to race.

I would imagine personality and/or propensity to mental illness or addiction are decent predictors of likelihood to commit crime.

See this podcast for an actual experts take https://samharris.org/podcasts/211-the-nature-of-human-natur...


That sounds like "predictive policing". The problem is that the institution that wants to predict crime might be inclined to use attributes of people who were previously arrested/convicted as the basis for the predictive model.

They won't be watching out for you based on personality disorders, addiction, or any other reasonable indicator. They'll watch out for you because you have attributes that match the type of people in jail right now. It's not going to be indicative of criminal behavior.


If they put moderate resources into it I'm sure they could come up with something fairly predictive. For example this paper [1] finds a significant, but weak correlation between height and violent criminality. Genetic influences on height are well known. However, point taken that all models are subject to abuse.

The morality is still fairly grey though, and I think the reward vs intrusion ratio would have to be pretty high before it gets widespread buy-in. Personally, I prefer the state being disinterested in my genes.

[1] https://academic.oup.com/ije/article/43/3/835/760664


If you were putting off 23andme in 2009 you would miss out on their health reports (they have banned since).

If you were putting off whole genome sequencing last year, it will be banned by next year.

I m afraid it works the opposite: early adopters take risks and reap some rewards , late adopters are being played by regulators, spying govts and scammers.


About a decade ago I thought about volunteering for one of the public genome projects but then realized that (1) the legal protections didn’t exist yet and (2) the privacy question should be considered not only by me but also by my family.


One of the biggest of those: https://www.joinallofus.org/

I've considered joining it.


What is the impact of having your DNA known? As far as I can tell the worst case scenarios are finding out you have to pay child support or getting placed at the scene of a crime.

If those risks don't apply to you, who cares?


> If those risks don't apply to you, who cares?

Others have mentioned that that's a bad argument, so I won't rehash that.

> getting placed at the scene of a crime

That's a pretty damn bad "worst case scenario", but here's a few I'm going to toss out without too much thought:

1. Health insurance companies can deny you coverage. In America, that can be a literal death sentence. (Yes, GINA 2008 was passed, no, I don't want to bet my future health care coverage on it not being repealed, mangled, or bypassed in some other way.)

2. International risks. A lot of discussion here is largely focused on American law. But many of us aren't American, or aren't just American. Look at my username; I have ties to another country, and I frankly have no idea what sort of risk I might get exposed to there. Getting placed at the scene of a crime in some jurisdictions is much more serious than you make it out to be; being identified as being a relative of someone else could also have dire consequences.

3. You know those scams where Grandpa Joe gets a frantic call from his distraught granddaughter Jane, and she's in Mexico being held up on a bogus charge, but if he wires their police department $500 ($5000?) the whole thing goes away? This becomes much easier if you can look up family histories.

4. You cannot predict the future. You have no idea what's coming down the pipeline.


I'm not seeing anything compelling in any of your 5 points.

0. You are arguing that people who aren't subject to a specific risk should be worrying about being subject to that risk. That is a bad argument. So bad it feels absurd to have to type it out to you.

1. The law could change in the future? OK... Laws could change in an infinite number of ways. I can't mitigate an infinite number of risks.

2. If you visit a country where this is a risk to you, then avoid the risk. Nobody said otherwise. It is dishonest to argue with strawmen.

3. There are many easy ways to find someone's relatives. DNA does not change this situation in a material way.

4. Yes, I agree that you cannot predict the future. But much of your argument is based on the assumption that you can do so.


Getting placed at the scene of a crime applies to everyone.

Remember that once you do it, it’s out there forever. So you can’t just rely on “I haven’t and won’t break any laws that exist in my country right now”.

Having certain characteristics that show up in your test could be illegal in 20 years time. You don’t know.


That's an interesting point, but if your government becomes blatantly oppressive they don't need DNA to do it.


The resistance movement in Norway, during WWii, targeted and blew up the citizen registry, because it was used for evil. Any database we build now could be used like that. Now they are easily copied, so we won't be able to blow them up when it's already too late--we must avoid building them.


Do you think it was a mistake for countries to continue compiling databases of citizens after WWII? Census? Phone books? These are all mistakes?


No but the DNA database helps them track you down.


Sure. They might outlaw brown hair, too. They might outlaw last names with vowels. That hypothetical, imaginary risk doesn't make it sensible to dye your hair and change your name.


Tell the 6 million Jews, hundreds of thousands to million+ Romanis, and hundreds of thousands of disabled who were systematically exterminated by gassing, shootings, starvation and various other means that being outlawed is a "hypothetical risk". Even beyond WW2 to say what you said is so incredibly against any form of historical understanding that one must start to wonder what your motive with it is.


Your motive appears to be to troll from a position of ignorance. No, DNA tests do not cause holocausts.


More to the point, the government can just collect your DNA itself if it wants to.


If you’ve got nothing to hide... then make it all public. Let’s start with your finances.


That argument is so bad and is so inefficient that it does more harm than good. People sacrifice their privacy as a trade-off to get something. What do they get by simply releasing all their finances?

Every time I've used it they just laugh it off with "why would I do that?" and think I'm ridiculous.


I openly talk about my finances with anyone who wants to talk personal finance. What threat are you imagining this could pose?


let's start with your bank account and routing numbers.


I share that information when it benefits me. That's the basis of ACH. Next?


Specific pornographic preferences and fetishes? Nothing illegal there, no reason to hide.


What is the advantage of sharing that information?


Finances are different right? People tend to hide their finances because of taxes and other illegal shit, and also to prevent jealousy.

As for genetics, most of your genetics are on display every time you walk out the door. People look at you and they can have a good guess about a huge portion of your genes. For example if you have a beard and a penis you probably have a Y chromosome, though this is more challenging to figure out nowadays.

Thus mostly their's really nothing left to hide in terms of genetics. In terms of finances... while I specifically have nothing to hide, more people have things to hide in this area.


This is a variant of “the honest have nothing to hide” argument, which is just wrong.


No, it is not. That argument is about what should be legal. We are discussing what is personally risky. These are completely different concepts.


I was just wondering if this one leak would spur a hike in organ thefts. Or a spike in abusive husbands and fathers, pedophiles and rapists tracking down the victims that escaped them.

Even if this doesn't happen, the future is a devious thing; I think we will eventually get to a stage of gene oppression; We have went through periods of oppressing and persecuting religion and ethnicity. DNA seems even more vulnerable to this kind of prejudice. And even if we can secure some legal protection, to the million peoples families, that won't matter now.

I don't know what will happen in the future, but i can imagine how much smoother the holocaust would have went if DNA were public.


Organ theft and the holocaust? If that's what you're worried about your problems are already much much much more severe than what we're discussing here.


What problems would you rate as more severe than being gassed alive or having your organs stolen?


we should always try to minimize future catastrophes by enshrining rights and regulation around issues that could contribute to them.

We should not be tricked into ignoring these issues because catastrophes are rare, as this would logically make them less rare.


What are the benefits of you knowing? Seems like the only reason is mild curiosity.


The benefits of personal DNA tests are learning about your health and your genealogy.


According to their own FAQ, Nebula uses a lab in HK. In current times, that may be of concern.


surely enough of your cousins did that it doesn't matter


[flagged]


I dont mean they should do it, I am saying their protest is in vain... because that is a factual reality.

The security ship has sailed, this is the Black Mirror episode.


This was bound to happen at some point of time. I have been having repeated "conversations" with my dad about why he and I should NOT send a cheek swab to 23andme (or any similar services). Today I think I will be able to drive the final nail in that coffin.



That url is atrocious. It looks like the MIT tech review doesn't pay for its Heroku account.



This is why I want a genetic sequencing lab that will sequence your genome, send it to you encrypted by your own public key and once you confirm receipt and verify it is valid, DELETE IT COMPLETELY. Along with the record you were their customer after the 6 months or whatever required for waiting out chargebacks.

Then you can analyze your DNA with a desktop app that doesn't send out any data.

The deleting part is hard to find.


There's a massive tension between privacy and utility. Most of the value of having the data is in publishing it so you can match with relations.


Seems unlikely to be a sustainable business.

For GEDMatch, Ancestry.com, 23andMe, etc, most of the value comes from being able to aggregate many people's data. If they had to delete it after collecting, they'd have to charge a lot more, and there's just no market for that.

Perhaps they could anonymize the data (at least, purge foreign key references to account/billing info) after 6 months, but not delete it.


It’s not unstable in anyway. What he’s describing is a lab. Lots of labs will do exactly what he wants.


Much like you can't anonymize browsing history data, email metadata or financial transactions -- I suspect DNA information also cannot be satisfactorily anonymized.

"Anonymized data" is a marketing term.


Was going to say this as well- I highly doubt it's possible to anonymize DNA and still have useful data.

'Anonymized Data' is a misnomer.


This makes me wonder if there would be some use in zero knowledge protocols that use a person's DNA information for the secret.


You can do pretty much that by getting your DNA sequenced by Dante labs and then using Promethease on it.


Probably the worst breach in history (so far), because unlike anything else, this information can't be changed


I understand the desire to trace one's family history, find/treat diseases, discover murderers, etc. However, any time I read about these types of personal information breach events (DNA and genealogy could arguably be the most personal info of all) I so badly wish we didn't have this tech to begin with and how much present day sucks compared to the past as a direct result of these personal data mining tech companies (thinking social media, surveillance as well). I also wish the general population thought more clearly about the long term consequences of their information being in the hands of others before they so naively and/or willingly divulge it. Worse yet, we often don't have the choice. Nightmare scenarios where some could wield such information to do harm are not too difficult to think up, and if we are really being honest with ourselves, are occurring present day. Personal information data playgrounds like Facebook become precision tools for deception and oppression at best, genocide at the worst (thinking Myanmar). Not to single out Facebook, imagine what a psychopathic genocidal leader could do with 23andme data. With the rampant data collection, the human population has never faced this scale and breadth of societal threat before and we are indirectly feeling the consequences of it in our lives daily. I wish we could go back.


This quote by John Young of Cryptome sums up the dark truth of the state of cybersecurity:

" Wonder how long it will take to reveal cybersecurity is a Ponzi racket.

Profits from commercial harvesting data of online users now exceeds the total funding of all the global spy agencies, with a healthy chunk of the steal bought by official spies and law enforcement which ignore the violation. Edu, orgs and NGOs part of the rotten racket."

Essentially, every major data breach is planned by the "good guys" having a stake in criminal ops.


There should be fines big enough to bankrupt the companies who fail to secure data this kind of data. Is there some other way to convince them to take the issue more seriously?


> There should be fines big enough to bankrupt the companies who fail to secure data this kind of data

...and then when their assets are broken up and sold off in bankruptcy, your sensitive data ends up scattered to random companies you never heard of.


That just pushes them offshore.

I would rather that there be greater security training in software development programs/bootcamps.

I’m a software engineer. I know a lot of software engineers. None of us have ever been trained in security.

Any “best practices” are usually picked up in Stack Overflow conversations.


It seems to me that the way to deal with offshoring would be to bring back a modern version of outlawery. The US could basically declare: "Until this corporation pays their fines the US will not prosecute or extradite any individual or corporation who hacks them, steals their physical or intellectual property, declares debts to them canceled, or violates contracts with them."


Software engineers don't run these companies, executives do. Even if you have security training, that won't do you much good if leadership doesn't value security. If your company stores highly-sensitive data, you need teams dedicated to security, you need regular audits, and you need your entire company trained to handle phishing attacks.


Verogen might very well be in trouble because of CCPA violations either from state fines or from consumer suits.


This is why I did my DNA sequencing several years ago with a fake name, a sparkling brand new email address, at a unique domain registered for the purpose, with a fake name as the registrant, paid for with a prepaid card, via a VPN. I downloaded the results and let all of it lapse; other than the DNA itself, it is utterly disconnected from the rest of my digital records.

It's a shame that one has to go to such lengths to safely use health-related electronic services.


I’ve always wondered if this were a worthy business proposition, cause I would definitely buy a product like this:

Basically all of the features of 23AndMe/Ancestry/etc, but done offline. You’re given an app to download online, provided all of the hardware needed to spit in a tube, and get the same results.

No data stored on a cloud server, and no centralized database of everyone’s DNA. That’s probably where the real business model is though.


I think you're missing the part where you have to send the tube to a lab to do the actual sequencing. At that point they have your data, and even if there were to be a provider that says they don't keep it, that's about as credible as all the VPNs which "don't keep logs" where we later discover, whoops, they lied...


Right, maybe this is where I’m being ignorant, but would there be a way to do the actual sequencing down to a consumer device?

I presume the machines used are pretty complex.


DNA sequencers are not that expensive [1]. And I’m told the actual lab work is not that hard or dangerous (high school level?).

I fact, the database correlating millions of people’s DNA with their medical history and migration history is probably the hardest part.

But the potential market is there. I’d gladly play $1000 to have my sequence, even unanalyzed, with the knowledge no one else does.

1 cursory look at eBay. I don’t know if those sequencing machines are good for human DNA - I hate bio.


I'm assuming that you meant to link a MinION (as it's the only device I know of at that price point). They would be fit for human DNA, though a single flow cell (consumable part that will degrade after X amount of DNA read) might not be quite enough to read a whole human genome with the desired accuracy.

So if you purchase all the consumables (flow cells + chemicals) in low quantities, a single human genome will probably run you around $2000 in materials. With the bulk orders from their website you could get it down to half of that (so probably even more if you were doing really big bulk orders).


$1000-2000 seems like the price point I was expecting for a full offline solution. It does seem too high for the mainstream market when 23AndMe kits are going for $99 despite all the privacy concerns.


Well, you could sue for breach of contract and have penalties in the contract. After all, you rely on other people to do their jobs in other critical aspects of your life


I consider myself a fairly optimistic person. Yet here we are deeply immersed in a world of technology that trades privacy for conveniences (that we did fine without before) and week after week these mega data stores are compromised and we just move on. The optimist in me hopes its merely incompetence and greed, but then it seems almost programmatic.


Yikes... Now I'm glad I have been telling all my friends who are considering using genealogy database services to use fake names.


Like this wasn't just waiting to happen.

You voluntarily hand over your DNA to a private company. What could possible go wrong?


Well, I'd add : You voluntarily hand over your DNA to a private or public company. Makes no difference. The bigger the trove, the finer the hackers.


That’s why I bought the tests on Amazon on Father’s Day sale. Then used completely fake info and fake email to register on the testing company site. Totally anonymous as there’s no way to link the purchase to results.


Eventually that data will become associated with your real identities. How could it not? you're obviously so-and-so's grandfather/first-cousin/whatever, and they gave their names.


For 23AndMe you can buy the kit in cash in a store like Target and post the sample. Then use anonymous connection and email to use the website and get the results.


I wonder if we're getting close to being able to synthesize a DNA profile and fool most of the labwork being done.

Most DNA profiles are SNP's and they wont be enough to 'clone' a DNA sample.


I'd be only interested in this stuff when we can do our own dna readouts at home and compare it against population level statistics that have been published publicly by researchers


Is there a list somewhere of who exactly was exposed? It's difficult to remember which sites I've given DNA to and which I haven't.


The human genome is about 3.4B base pairs (G-C, A-T). The specific DNA used for genealogical matching is 700K base pairs. So the testing companies are only using 0.02% of your DNA, hardly enough to compromise you.

Furthermore, the matching process is based on SNPs (Single Nucleotide Polymorphism) and STRs (Short Tandem Repeat) in the "junk" DNA section, which constitute 92% of your DNA, and is distinct from the coding DNA that contains health traits, among others.

So, not much to worry about.


Is there any way to get my DNA analysed anonymously? Like, with just a throwaway email and payment via some service that anonymises?


At least it was possible for one person to send two identical samples under two different names a few years ago to one company, but if everyone has closed that loophole yet - I don't know.

Alternatively (a business idea for someone here who has already registered?) you could send in other peoples samples in tour name and then request deletion via GDPR or something. Do things that do not scale and all that ;-)


Is there a download available? It could be an exciting time to do some bootleg research


Let the Clone Wars begin!

On a more serious note, is their any way to have your DNA analyzed confidentially ?


Amazing we don't have a law granting each individual copyright of their own genome.


Why? Who is going to grease politicians to write that law?


Aliens absconded with the DNA records obviously. Connect the dots people!


Perfect, so I, a hypothetical nation state can build targeted and tuned viral RNA for phenotypes and people I know will definitely cause me the most trouble on the battlefield, diplomats, engineering floors, and economy? Oh, corona has among the largest kilobase count? Hmmmmmm. What a fucking coincidence!


Well that's completely unsurprising.


Self-hosted genome sequencing when?


Where do I reset my DNA?


1 million and me.


Not saying that building databases of DNA is a good idea, but DNA is basically public information. Everyone whose hands you shake (nowadays quite rare) gets copies of it. The Amazon package you get has genes of every human who touched it. If you send it back, you are sending Amazon your genes. The only issue is the sequencing and the consent to use it for purposes like "improving our services" aka improving the ads targeting or insurances (once the DNA company is bought by an insurance). Consent is arguably less of an issue for hackers.


It is a bit like face recognition databases. In principle, the data is already public-enough. In practice, building these databases enables qualitatively higher levels of surveillance.


How, exactly? It's not like I can use wide-area instrumentation to locate you via your genome. You can imagine how to do it with cameras and faces, but I just don't see the method for DNA.


Imagine the BLM protests (since that will probably be popular with the HN crowd).

There’s video footage of a guy in a mask spitting on the ground after throwing a rock. He’s wearing a mask.

His second cousin did 23 and me.

Actually, statistically many of his second cousins did 23 and me.

Therefore we know who he is.

If only one second cousin did 23 and me, we’ve narrowed the suspects to, perhaps, a few hundred. Filter by apparent height, gender and you have a very narrow set of suspects.


Didn't understand your point. Identifying specific individuals is not the same thing as mass surveillance.


But it IS a qualitatively new mode of surveillance that can’t exist without large databases.


Definitely agree. The point I'm trying to make is that DNA is a bit more "private" than your face, as there is a nontrivial cost to sequence it, but in general it's the same level. One day we'll be able to read thoughts and I'm pretty sure that some folks will build thought databases and people might even share their thoughts with the public... and ad companies will love it because they love checking the reactions of people to ads.




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