The results she received were entirely unenlightening, 50% of my DNA is now in their sketchy database, and I have no way to opt-out of anything.
I truly despise this organization.
So perhaps be less upset that Mom signed up; our DNA really isn't ours in the same way the documents on our hard drive. You were never going to be able to opt-out.
https://jacquesmattheij.com/your-genetic-information-is-not-...
I wish my mom had read this. She would have understood the implications, and not done it.
It's very annoying how these companies sucker people in to do things they might come to regret later, there is absolutely zero transparency here. Besides the potential for massive privacy violation there is also always the specter of future uses against your interests.
This. The danger isn't even necessarily that we gain some crazy ability to predict things about a person from their DNA, but that people believe that it can be done accurately and that police, courts, government, marketers, etc believe it as well.
Police don't need much convincing if it gets them a conviction. Courts will already admit evidence from forensic labs which have been proven to fabricate evidence. Governments will let just about anything fly if someone donates enough, and if marketers are convinced that it might work, there will be no shortage of cash for campaign funds.
Currently, to my knowledge, you can take somebody's DNA and do just about anything with it without their knowledge or consent, and there seem to be a lot of well-monied interests with a stake in keeping things that way.
But yours isn't nearly so...catchy looking...as the New Yorker version.
You should see my e-bike, it is quite literally covered in duct tape (it was meant temporary, but we all know how that goes).
Also:
https://jacquesmattheij.com/if-you-have-nothing-to-hide/
Which is probably my best article.
> Which undoubtedly well meaning civil servant long before World War II came up with the brilliant idea of registering religious affiliation during the census is lost in the mists of time.
I guess this happened because The Netherlands used to be a very religious nation?
I mean, in 1901 they got Abraham Kuyper[0] as a prime minister. Abraham Kuyper was a Christian minister, and is well-known among Reformed Christian circles as a very impactful theologian.
It is very understandable that a nation like that would want to list religion as part of their census data.
Yes.
This makes me so angry it is hard to describe.
I personally don't have any murderous history to hide. But there are unintended consequences with all of these losses of privacy. As a peer comment has rightly pointed out, nation state adversaries now have these same profiles.
Maybe they can find a common DNA profile for an efficient bio-weapon. Oops.
I escaped an authoritarian regime as a child, thanks to the same mother. I hold no ill will towards her, but I am deeply aware of the issues that bad actors can create with by compiling huge databases of otherwise unnecessary information.
I've been meaning to ask, could you please remove the curtains to your bedroom so I can see in? I know you're not doing anything wrong so you've got nothing to hide.
Sounds like a free speech issue.
(Putting aside my modest proposal, I still want to be able to research my family history.)
I think we already reached the end of the bioweapon tech tree with Sarin gas.
I guess if you could target one person specifically? But then again there are way easier ways to kill people.
The problem with bio-weapons has always been "blow back." Narrowing the scope of the weapon would help a lot with that.
You need something which reproduces itself even in non-targets, which enters the cell's nucleus, which detects the correct DNA - which may be scattered across the genome! -, which has a mechanism that kills the target people, and where none of this will mutate so as to stop effectiveness, change/broaden the target population, etc.
Furthermore, just because people identify as a group does not mean they have a distinct genetic pattern. How would you target "Christians" or "Americans" or "Hispanics"?
This appears to be a harder task than curing cancer, in that many of the same techniques could be used to target cancerous cells but that does not require the ability to spread from person to person.
A bioweapon doesn't appear in a vacuum. The required technological advances will be widely known. In this fantastical cancer-free world, why wouldn't your local health care center have the ability to sequence unexpected genomes and prepare a vaccine or phage in the same day?
You don’t need to have a 1:1 mapping in order to be effective. Incapacitating a sufficient number of a group is enough.
Similarly, such a bioweapon in an assassination context doesn’t need to only kill the target or go unnoticed. It’s enough that it is a disease or irritant that a particular individual is susceptible to.
Assuming you have a communicable bioweapon which is somehow able to target based on genetics, and assuming the rest of the world isn't able to defend against it, that still leaves the very tricky question of finding a genetic basis which characterizes any of those three categories in a way which is sufficiently effective.
Do you really believe there is way to identify "Christians" based on genetics?
"Incapacitating a sufficient number of a group" is NOT enough. You also need specificity.
What genetic markers indicate "American"? Sure, if you target something simple like "has a Y chromosome" you might take out about 50% of the US population, which is likely a sufficient number, but you'll do equal damage to your own population.
How would a bioweapon meaningfully target "Hispanics"? The term is definitely not based in genetics. If some villagers from a German town emigrated to Argentina and others from the same village emigrated to Canada, then according to the US the descendants of the first group are just as Hispanic as Black Spanish-speaking Cubans, while the descendants of the second group are "white".
But, okay, you've figured something out. Now how do you prevent your bioweapon from mutating the specificity away? You've added a lot of machinery to the organism which must be preserved perfectly even though that machinery isn't required in order to reproduce.
The more failsafes you put in, the bulkier the organism and/or the fewer genetic markers you can target.
Clearly you should be promoting DEI as a way to increase group robustness against future bioweapons. ;)
If targeting proteins or regulatory regions of DNA, how? Are you going to try to CRISPR it? This may be effective in quiescent or senescent cells. But I think even quiescent cells have some DNA repair pathways. At best such targeting may speed up the aging process and cause some cancers.
Are you going to integrate a toxic gene at a specific chromosomal locus? Maybe that would work. You'd need a very efficient gene therapy approach to do it though.
You just need to think you have.
And as I wrote, this sort of bioweapon won't be possible until we've effectively cured cancer, and likely also developed methods which can easily identify and stop it.
Again, the technology would be able to cure cancer. Do you really think all those employees - who know that their friends and family could be cured of their cancer - would be willing to keep mum of the cure?
If I'm wrong, what are you thinking of?
Throw one into a gene therapy vector and it could conceivably reproduce itself (though that seems like a bad idea for a cancer therapeutic anyway).
mRNA cancer therapeutics do not target nuclear DNA. They do not enter the nucleus and they produce proteins to trigger an immune response against the targeted disease, not against the DNA of the targeted disease.
If there are already viable full-cure treatments for all those cancers then why aren't there viable full-cure treatments for this sort of bioweapon?
Feeling ill? Sequence all the organisms in your blood, spot the unexpected ones, develop a vaccine/phage against it, and poof - all better.
Sure, you can construct movie plot scenarios to do anything. In a movie, our hero can use a lighter to ignite the leaking fuel trail from a jet plane taking off and cause it to blow Up. That doesn't mean it's likely or even feasible.
Plenty of possibilities. A cancer is ultimately a mutated genome in a viable cell gone awry. Even with contagious cancers (like the one killing the Tasmanian Devils) you're still ultimately dealing with an infectious eukaryotic cell of basically the same species type as the organism, and our mammalian immune systems are already used to targeting our own cells gone awry. Viruses, satellite viruses, prokaryotes, other eukaryotes, edited out, and whatever I'm forgetting will require a diversity of approaches (unless someone invents pico-scale teleportation).
Anything which can do that can target the mutated genome of a cancer in a human.
> of basically the same species type as the organism
Which means you will not be able to target a single person or subpopulation, because they are all the same species type.
That's your strawman. But I can - easily, at that - imagine a POC that would be specific enough to kill a single human with a very high degree of success given some meta data about them and a sample of their DNA. I'm for obvious reasons not going to expand on that here because we have too many idiots in this world but the fact that you can't imagine such things doesn't mean that others can not.
I can easily imagine hopping on the next Pan Am rocket service to Luna City.
I can easily imagine using a space laser to kill that same human.
I can easily imagine taking a bridge from Key West to Cuba.
I can easily imagine taking a pill to regrow an amputated leg.
Just because you can easily imagine a POC doesn't mean it's doable in our lifetimes.
What are you going to target in the DNA? Is it a single short sequence or multiple markers across the genome? How does the bioweapon sequence that DNA to find it? How does that then trigger the appropriate biological response? How do you prevent mutations? What infectious organism will you use? How do you know the target isn't already immune to that infection?
Even if you expand on one or two of these in convincing detail (congrats on your future Nobel Prize, by the way), that's still not enough for the idiots in the world to make a usable weapon.
And so many easier ways to kill someone exist.
You don't have to be able to target any group to be able to target some groups. Blacks, Jews and Uighurs might be sufficient. And those definitely have genetic markers.
"Jews" is less diverse, but it's not like there's a single "I am Jewish" marker. Just look at https://en.wikipedia.org/wiki/Genetic_studies_on_Jews to see how difficult is it, with overlaps to other populations, and the need to correlate multiple haplogroups. How do you put all that detection machinery into a bioweapon?
https://en.wikipedia.org/wiki/Uyghurs suggest there are similar issues with Uyghurs - what will the bioweapon target if "the average genetic ancestry of Uyghurs is 63.7% East Asian-related and 36.3% European-related"?
And how do you prevent the bioweapon from mutating that specificity away?
Yes, such a weapon will never be very precise. But since no weapon ever is (collateral damage) that doesn't mean it won't be used.
> And how do you prevent the bioweapon from mutating that specificity away?
You don't. But even that won't stop such a weapon from being used. Every weapon that man kind has been able to envision and create has been used. Not a single exception.
Setting that aside, the hydrogen bomb has not been used as a weapon, only a deterrent.
Same for the neutron bomb (an "enhanced radiation weapon").
And nuclear depth bombs ("All nuclear anti-submarine weapons were withdrawn from service by China, France, Russia, the United Kingdom and the United States in or around 1990.[citation needed] They were replaced by conventional weapons such as the Mk 54 Torpedo that provided ever-increasing accuracy and range as anti-submarine warfare technology improved." says https://en.wikipedia.org/wiki/Nuclear_depth_bomb ).
"The United States Army Biological Warfare Laboratories weaponized anthrax, tularemia, brucellosis, Q-fever and others.[51] ... In 1969, US President Richard Nixon decided to unilaterally terminate the offensive biological weapons program of the US, allowing only scientific research for defensive measures." says https://en.wikipedia.org/wiki/Biological_warfare .
Have all those weaponized organism really been used as a weapon? Not to my knowledge.
These all sound like exceptions.
I think you mean "nation state country polity" :P
> Maybe they can find a common DNA profile for an efficient bio-weapon
For this it doesn't matter whether a "nation state" is making the weapon. An empire state, sub-nation state, or non-state entity would be fine. What matters for a common DNA profile weapon is that said entity targets a mostly ethnic state, or non-state nation such as the Kurds, preferably with an ethnicity genetically distinct enough from one's own people, and that said ethnicity is genetically specific enough, in exactly the right ways, to target. As eesmith writes, good luck with that.
> ... which exposed sensitive personal information that included things relevant to ancestry trees, birthdays and general geographic locations. In some cases, the company said that the hack could have exposed the pictures and display names of affiliated family members also using the company’s services through the accounts that were primarily breached. 23andMe insists that no actual genetic material or DNA records were exposed
> ... A 23andMe spokesperson told Engadget that hackers accessed the DNAR profiles of roughly 5.5 million customers this way, plus Family Tree profile information from 1.4 million DNA Relative participants.
>DNAR Profiles contain sensitive details including self-reported information like display names and locations, as well as shared DNA percentages for DNA Relatives matches, family names, predicted relationships and ancestry reports. Family Tree profiles contain display names and relationship labels, plus other information that a user may choose to add, including birth year and location. When the breach was first revealed in October, the company said its investigation “found that no genetic testing results have been leaked.”
https://www.engadget.com/23andme-hack-now-estimated-to-affec...
Presumably the journalist at Stackdiary translated "DNAR profile" into "genetic profile," which is a term with no standard definition, but if it had one, I would have guessed it would mean at least some DNA info.
23andMe could be lying or ignorant of what happened, but that would also mean that there would also be another news cycle when further disclosure was mandated.
Imagine there came a responsible DNA service tomorrow, which used differential cryptography or something, so that you could share DNA and look for relatives with some semblance of privacy.
They wouldn't get off the ground, because your relatives? They're on this service, or Ancestry or MyHeritage or FamilyTreeDNA, which are every inch as sleazy, US or Israeli megacorporations which you can trust as far as you can throw them (which isn't an inch).
Point is, start demanding legislation around data privacy and security to anyone who will listen.
However, I entirely agree with your last statement. I would like to call upon anyone who appreciates privacy to get behind a neural bill of rights. While it sounds a bit "tin foil hat" at the moment, non-invasive brain–computer interfaces are coming very soon. Especially using infrared techniques.
Today, TSA scans your face, soon enough it will be your brain. This is not a joke.
If the USA misses the boat on regulating neural interfaces, we will sail through the final frontier of personal privacy, and even agency.
I highly recommend that everyone listens to, or reads the transcript of Sean Carroll's podcast with Nina Farahany on the topic. It is dense with legal and technical information.
"Nita Farahany on Ethics, Law, and Neurotechnology"
https://www.preposterousuniverse.com/podcast/2023/03/13/229-...
> The stolen data included the person’s name, birth year, relationship labels, the percentage of DNA shared with relatives, ancestry reports and self-reported location.
https://techcrunch.com/2023/12/04/23andme-confirms-hackers-s...
This DB is a goldmine and I take an extremely pessimistic view on infosec.
Information wants to be "free" after all. Look at the KSA agents who were implanted at Twitter as an example. I would have to assume that nation state actors would also implant employees at 23andMe.
The publicized hack is the one we, and 23andMe, know about. It's just too juicy a target to keep safely guarded in perpetuity.
Simply by compiling this information, you are more or less guaranteeing it falling into the wrong hands eventually. This is an example of information which never should have been compiled.
Nothing, as it's a judgement and not an action.
We may act on a judgement though, let the coffee cool down, or avoid dealing with the unethical company.
My point is, until legislation changes, it will get worse before it gets better and misdirected anger won’t achieve a valuable outcome.
I would rephrase your point, "don't be surprised when a company capitalizes on lack of laws" -- this I agree with. It's virtually a force of nature.
We are all law abiding citizens, what do we have to hide, right?
Well, she did not read the T&C as far as how this information would be shared, and did not consider the implications of how she was making a choice for the people who she named on the family form, and did not consider the inevitable infosec implications which we are now all enjoying.