5 ms·

I'm in favor of privacy, and I'm willing to go more out of my way to not share than the vast majority of people, but I'm also in favor of individual choice, and

I'm in favor of privacy, and I'm willing to go more out of my way to not share than the vast majority of people, but I'm also in favor of individual choice, and I can't think of a privacy model that would disallow other people from sharing their information just because you have some matching information.

suslik 3y ago
That can be achieved through anonimity. I don't understand why companies have to know who I am in such detail. Every little website requires my phone number, SSN, retina patterns and the name of my childhood pet. If I could use 23andme under the pen name "Ivar the Boneless" and pay for it with a bit of cash in an envelope (or crypto), the current problem wouldn't exist. Tools like Telegram or Signal do not allow creating accounts without having a valid phone number. Of course, it is possible to use a web service to receive the registration SMS, but that shouldn't be the case in the first place.
kfk 3y ago
FYI, the police is able to find criminals now by finding DNA sequences similarities with your relatives. Not saying this is good or bad, I am just saying you don't know the extent of the impact to your personal freedom when your relative's DNA is shared.
- HenryBemis 3y ago
  Well they can narrow it down to the family, unless it was the very DNA giver that left that DNA sample on the scene of the crime. And since 23andme (as I assume others) don't do these anonymously, there is no hope. Unless people use someone as a proxy (i.e. I-1 give my sample to a male colleague to send it as his-2, he-2 gives his sample to someone else to send it as his-3, and so on..). Police would eventually find the guilty in case of a crime, but the 23andme's of this world will be selling confusing (wrong) data.
  - stef25 3y ago
    There are plenty of cases where DNA is found at the crime scene, run through a database, match is found with a relative. Then the cops start looking at the family and boom there's your shady uncle with priors they got their guy.
    - quickthrower2 3y ago
      Yes it has come up a few times on forensic files usually on cold cases.
  - dylan604 3y ago
    If this was someone trying to fly under the radar by using this scheme to buy burner phones or some such, sure. But this is literal DNA, so even in your attempts to obfuscate, they’d know the name and the sample do not line up, but then be able to link the sample to a family and then figure out who you really are
  - pavel_lishin 3y ago
    They can narrow it down to individual family members, based on how much DNA overlap there is.
- pfdietz 3y ago
  I can help track down distant family members who have committed crimes? Sounds like a plus. I think the angst about this comes from men who don't want their status as fathers of illegitimate children (or, rapists when they were younger) unmasked.
  - Majestic121 3y ago
    Why do you make this issue gendered, and if you do why would it impact only men father of illegitimate children, and not cheating mothers ?
    - pfdietz 3y ago
      The mother will already be connected to the child. The father is what would be needing tracking down. I mean, wasn't that completely obvious?
    - watwut 3y ago
      Cause in the case of cheating mother, it is clear she is the mother. And to confirm fatherhood of husband or partner, no external registry is needed or helpful.
  - mschuster91 3y ago
    > I can help track down distant family members who have committed crimes? Sounds like a plus. It's no longer so easy when the definition of "crime" gets expanded. Let's take this scenario: - you're a first generation Chinese immigrant in the US - a nephew of yours is in China and critical of the CCP - you decide to have your genome scanned into 23andme or whatever to determine if you are at risk of genetic illness - your nephew sprays an anti-CCP tag on a wall somewhere - the Chinese police gathers DNA evidence from a laxly discarded spray can, but doesn't have fingerprints so they can't immediately link the can to your nephew - the Chinese government, either via a legal subpoena or via espionage, gets its hands on your genetic profile from the genetic analytics company - the Chinese government finds your data, now knows that the sprayer must be related to you in some way, and forces everyone of your family to subject to a DNA test Sounds dystopic? Yes. But this is exactly where we will be headed. Police here in Germany already do DNA tests on petty vandalism [1]. [1] https://www.fuldaerzeitung.de/fulda/fulda-bahnhof-neuhof-dna-analyse-ueberfuehrt-taeter-polizei-strafverfahren-91257652.html https://www.fuldaerzeitung.de/fulda/fulda-bahnhof-neuhof-dna...
skummetmaelk 3y ago
I can think of an easy model. Disallow collection of personal information. Pull the rug out from under "services" which are really just data collection fronts turning a profit from selling your data instead of the primary service/good for money transaction. 23andMe could still have operated legally under this scheme. They could have done the analysis and sent you a printed sheet. But no, they had to store everything to be able to double dip by selling the data to pharma companies and whoever else would pay for it. If you can't turn a profit without underhandedly selling your users' data. You deserve to fail.
- mewpmewp2 3y ago
  What about people who would want to donate their data to further the research?
  - seszett 3y ago
    They can enrol in studies at actual (non-profit so they don't benefit from selling data, probably public funded) research institutes.
    - acuozzo 3y ago
      > non-profit so they don't benefit from selling data Non-profit in the US is a tax status. Many CEOs of non-profits enjoy multi-million dollar salaries and bonuses.
- stef25 3y ago
  > Disallow collection of personal information It's all about the money, always. So not gonna happen.
- maxerickson 3y ago
  They are frank about also selling the data for research, it is not underhanded. It's even opt in... For example, they talk about it on this page, which is linked from the about menu (so available with pretty small effort): https://www.23andme.com/research/ https://www.23andme.com/research/ I expect lots of people also like that they get updates when information about new markers becomes available.
croes 3y ago
But if it's genetic information, it's not your data alone. It's your data, your parents' data, your childrens data etc.
epicide 3y ago
Nobody has perfect 100% individual choice/freedom. By itself, maximizing for it is a non-argument. The best explanation I've heard is that "my rights end where yours begin (and vice versa)". That is not an easy line to draw, so the debate becomes where exactly do we, as a society, decide to draw that line. (Noting that this also is never a singular, fixed answer) Even without defining a specific model around how genetic data should be handled, I think it's more than fair to say that most people right now don't even consider how their choice to sign up for 23andme might affect their relatives (already born or otherwise). Even if they do, in my experience, it's only to a very surface-level degree.

suslik 3y ago

That can be achieved through anonimity. I don't understand why companies have to know who I am in such detail. Every little website requires my phone number, SSN, retina patterns and the name of my childhood pet. If I could use 23andme under the pen name "Ivar the Boneless" and pay for it with a bit of cash in an envelope (or crypto), the current problem wouldn't exist. Tools like Telegram or Signal do not allow creating accounts without having a valid phone number. Of course, it is possible to use a web service to receive the registration SMS, but that shouldn't be the case in the first place.

kfk 3y ago

FYI, the police is able to find criminals now by finding DNA sequences similarities with your relatives. Not saying this is good or bad, I am just saying you don't know the extent of the impact to your personal freedom when your relative's DNA is shared.

HenryBemis 3y ago
Well they can narrow it down to the family, unless it was the very DNA giver that left that DNA sample on the scene of the crime. And since 23andme (as I assume others) don't do these anonymously, there is no hope. Unless people use someone as a proxy (i.e. I-1 give my sample to a male colleague to send it as his-2, he-2 gives his sample to someone else to send it as his-3, and so on..). Police would eventually find the guilty in case of a crime, but the 23andme's of this world will be selling confusing (wrong) data.
- stef25 3y ago
  There are plenty of cases where DNA is found at the crime scene, run through a database, match is found with a relative. Then the cops start looking at the family and boom there's your shady uncle with priors they got their guy.
  - quickthrower2 3y ago
    Yes it has come up a few times on forensic files usually on cold cases.
- dylan604 3y ago
  If this was someone trying to fly under the radar by using this scheme to buy burner phones or some such, sure. But this is literal DNA, so even in your attempts to obfuscate, they’d know the name and the sample do not line up, but then be able to link the sample to a family and then figure out who you really are
- pavel_lishin 3y ago
  They can narrow it down to individual family members, based on how much DNA overlap there is.
pfdietz 3y ago
I can help track down distant family members who have committed crimes? Sounds like a plus. I think the angst about this comes from men who don't want their status as fathers of illegitimate children (or, rapists when they were younger) unmasked.
- Majestic121 3y ago
  Why do you make this issue gendered, and if you do why would it impact only men father of illegitimate children, and not cheating mothers ?
  - pfdietz 3y ago
    The mother will already be connected to the child. The father is what would be needing tracking down. I mean, wasn't that completely obvious?
  - watwut 3y ago
    Cause in the case of cheating mother, it is clear she is the mother. And to confirm fatherhood of husband or partner, no external registry is needed or helpful.
- mschuster91 3y ago
  > I can help track down distant family members who have committed crimes? Sounds like a plus. It's no longer so easy when the definition of "crime" gets expanded. Let's take this scenario: - you're a first generation Chinese immigrant in the US - a nephew of yours is in China and critical of the CCP - you decide to have your genome scanned into 23andme or whatever to determine if you are at risk of genetic illness - your nephew sprays an anti-CCP tag on a wall somewhere - the Chinese police gathers DNA evidence from a laxly discarded spray can, but doesn't have fingerprints so they can't immediately link the can to your nephew - the Chinese government, either via a legal subpoena or via espionage, gets its hands on your genetic profile from the genetic analytics company - the Chinese government finds your data, now knows that the sprayer must be related to you in some way, and forces everyone of your family to subject to a DNA test Sounds dystopic? Yes. But this is exactly where we will be headed. Police here in Germany already do DNA tests on petty vandalism [1]. [1] https://www.fuldaerzeitung.de/fulda/fulda-bahnhof-neuhof-dna-analyse-ueberfuehrt-taeter-polizei-strafverfahren-91257652.html https://www.fuldaerzeitung.de/fulda/fulda-bahnhof-neuhof-dna...

skummetmaelk 3y ago

I can think of an easy model. Disallow collection of personal information. Pull the rug out from under "services" which are really just data collection fronts turning a profit from selling your data instead of the primary service/good for money transaction. 23andMe could still have operated legally under this scheme. They could have done the analysis and sent you a printed sheet. But no, they had to store everything to be able to double dip by selling the data to pharma companies and whoever else would pay for it. If you can't turn a profit without underhandedly selling your users' data. You deserve to fail.

mewpmewp2 3y ago
What about people who would want to donate their data to further the research?
- seszett 3y ago
  They can enrol in studies at actual (non-profit so they don't benefit from selling data, probably public funded) research institutes.
  - acuozzo 3y ago
    > non-profit so they don't benefit from selling data Non-profit in the US is a tax status. Many CEOs of non-profits enjoy multi-million dollar salaries and bonuses.
stef25 3y ago
> Disallow collection of personal information It's all about the money, always. So not gonna happen.
maxerickson 3y ago
They are frank about also selling the data for research, it is not underhanded. It's even opt in... For example, they talk about it on this page, which is linked from the about menu (so available with pretty small effort): https://www.23andme.com/research/ https://www.23andme.com/research/ I expect lots of people also like that they get updates when information about new markers becomes available.

croes 3y ago

But if it's genetic information, it's not your data alone. It's your data, your parents' data, your childrens data etc.

epicide 3y ago

Nobody has perfect 100% individual choice/freedom. By itself, maximizing for it is a non-argument. The best explanation I've heard is that "my rights end where yours begin (and vice versa)". That is not an easy line to draw, so the debate becomes where exactly do we, as a society, decide to draw that line. (Noting that this also is never a singular, fixed answer) Even without defining a specific model around how genetic data should be handled, I think it's more than fair to say that most people right now don't even consider how their choice to sign up for 23andme might affect their relatives (already born or otherwise). Even if they do, in my experience, it's only to a very surface-level degree.