8 ms·

Gave them my DNA last year, am not tech illiterate. It was cool to see the results, though not life-changing. I don't regret the decision - I don't understand w

Gave them my DNA last year, am not tech illiterate. It was cool to see the results, though not life-changing. I don't regret the decision - I don't understand why I should care that my DNA sequence is on a shady website somewhere. I don't understand the threat model people have here - how will my life be negatively impacted by this?

tapatio 3y ago
Ignorance is bliss.
keskival 3y ago
I agree, I have had my raw DNA data and all the analysis results publicly available since the day I took the tests. No problems. https://globatic.blogspot.com/2013/10/the-23andme-full-and-raw-genetic-data.html https://globatic.blogspot.com/2013/10/the-23andme-full-and-r...
jeromegv 3y ago
Once they sell it to your insurance company and they deny you some type of coverage for whatever reason.
- bernawil 3y ago
  see, this is where I don't get it. Can you send your material anonymously (burner email, pay in cash/crypto/prepaid debit card)? Then how could they match your DNA to your identity to sell it to insurance companies, etc?
  - dspillett 3y ago
    I'm sure that is possible. But what ratio of the public actually would think of doing that?
  - anjel 3y ago
    Ask one of the serial killers now rotting in jail thanks to 23andme!
    - bernawil 3y ago
      Was there ever a case of a convict getting caught by their direct DNA being found in one of these databases? I thought all cases where correlated from relatives. Government gets DNA sample, asks the databases: 'who do you know that's a genetic relative of this suspect?' and then they go and interrogate that person's every third cousin. You can't keep your family tree private, your birth certificate is out there. Opting out of 23andMe won't help you here.
      - runjake 3y ago
        A couple. One infamous case was the Golden State Killer[1] case. Though in that case, it was GEDmatch, not 23and me -- similar service, though. 1. https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Investigation https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Investig...
    - manxman 3y ago
      But that’s just it. You now get the 23 and me defence… my DNA data was hacked therefore there’s reasonable doubt the DNA linking me to the murder was synthesized from the 23 and me leak.
mixmastamyk 3y ago
Biometric auth being used more and more every day. Not hard to see requirements or and crime/impersonation in the future. Gattaca is still far off but one step closer than it was.
Eisenstein 3y ago
The fact that there is so much potential for the use of that information yet we haven't even started putting mechanisms in place to utilize it is what scares the hell out of me. If the threat model is 'to be determined' then especially when the data is being used commercially, for somewhat trivial reasons and without any substantial legal protections then the way to act is 'from my cold, dead, hands'. Just remember that no matter who in charge you think is neutral or bad or great, things change, attitudes change, shit happens (remember the Patriot Act?)... It isn't paranoid to say 'I don't trust the future, let's act cautiously instead of frivolously with things that have the potential to be extremely valuable to me, extremely impactful to society, and in which currently sits the greatest unexplored potential of this generation'.
- manxman 3y ago
  Cool so you going to wear gloves every time you eat out, touch a door, hold a glass etc.? You’re shedding DNA throughout the day. How is that fundamentally different?
  - deleted 3y ago
    [deleted]
  - Eisenstein 3y ago
    If I said I didn't want to go hunting with Dick Cheyney would you ask if I wore a bullet proof vest everywhere I went? When people look before walking into an intersection do you ask them if they erect bollards in front of their house? But ok. Next time you go in for surgery tell the doc not to wash their hands because you aren't a scaredy cat. Refusing to willingly take stupid risks is different than trying to live a life without them at all.
autoexec 3y ago
> how will my life be negatively impacted by this? Your would-be future employers may reject you because of this data. Why hire someone with a higher risk of certain diseases or disables? It'd be illegal, but companies don't care about breaking the law if it's profitable and it'd basically take a whistleblower for anyone to know it happened. They certainly won't tell you that's why you weren't hired. You could be denied housing or be targeted by extremists. More likely though, you'll be targeted by pharmaceutical companies. If the police didn't already have a copy of your DNA on file you might now have a place in every police line up, in any state in the US, for every crime committed where DNA evidence is collected. You could get wrongly flagged as a match through human error or statistics but either way it'll be on you to hire the lawyer who will have to prove your innocence. We're moving toward a digital caste system (several really) where the data governments and corporations have on you will determine what you're allowed to do, how much you'll pay for things, and what opportunities you'll have. Every scrap of data you surrender will be used against you by anyone willing to pay for it, used in whatever way they think will benefit them, at any time, and you'll probably never even realize what happened. Just like right now, where companies don't tell you that they used your personal data to determine how long to leave you on hold. There's no telling what kinds of harms this could bring you, and there's no taking your data back to prevent any of it either. I hope that data never comes back to haunt you. I'd sure hate to need to count on that never happening though.
- nylonstrung 3y ago
  This seems pretty far fetched. Do you really think a judge would allow a guilty verdict based on stolen genetic data obtained from a hacker? Do you really think braindead landlords and HR people would make decisions based on Promethease or whatever future tool replaces it? Monetarily the genetic data is marginally valuable at best, which is the same reasons 23andme revenue comes almost entirely from novelty-seeking consumers rather than industry.
  - dspillett 3y ago
    > Do you really think braindead landlords and HR people Maybe that part is far fetched. But insurance people will make user off it I'm sure. By letting this data out there you might be opting in to higher costs, or hassle getting insurance at all, that way.
faeriechangling 3y ago
The breach affects those related to you and affects you multi-generationally so there’s a lot of time for the impact to materialize. There are strong financial incentives for genetic discrimination on the part of insurers and employers. There are also plenty of fascists are happy as a clam to discriminate against anybody with certain genes. If there’s any reason not to care, it’s not the lack of impact, it’s the impossibility of securing the data. I could sit here all day and convince you that you should care and then your cousin would get a dna analysis done and that would ultimately make all your caution mostly irrelevant. The only effective way to ensure genetic privacy is a legislative effort to control access to genetic databases, trying to avoid being put in such a database is only going to slow down how fast this happens.
deleted 3y ago
[deleted]
upwardbound 3y ago
Someday when DNA synthesis machines have enough write length to be able to synthesize entire human chromosomes, someone with your genome data could clone you without your consent. Even if this takes 50 years to become possible, you still might not want unauthorized clones of you being made using data that you gave up when you were younger.
- kaba0 3y ago
  As opposed to getting a bit of hair/dead skin from you, they rather hack into some digital system?
  - 31337Logic 3y ago
    You don't hack into the system to obtain the data. You buy it. It's literally the most profitable thing on the planet right now.
- keskival 3y ago
  I hereby authorize any and all clones anyone ever wants to make out of my full DNA or parts thereof.
- a_bonobo 3y ago
  That's not possible with 23andMe data, they have 640,000 SNPs, not the entire genome/exome/methylome. They have 640k points where the genome is often different from others, but your own genome is 3Gbp long (3,000,000,000 basepairs) with usually a few million SNPs per person. 23andMe has a subset of the diversity in your genome.
  - upwardbound 3y ago
    That's good to know. In that case, my concern would lie with the physical saliva samples that 23andMe has retained, since they could be comprehensively sequenced later.
    - a_bonobo 3y ago

tapatio 3y ago

Ignorance is bliss.

keskival 3y ago

I agree, I have had my raw DNA data and all the analysis results publicly available since the day I took the tests. No problems. https://globatic.blogspot.com/2013/10/the-23andme-full-and-raw-genetic-data.html https://globatic.blogspot.com/2013/10/the-23andme-full-and-r...

jeromegv 3y ago

Once they sell it to your insurance company and they deny you some type of coverage for whatever reason.

bernawil 3y ago
see, this is where I don't get it. Can you send your material anonymously (burner email, pay in cash/crypto/prepaid debit card)? Then how could they match your DNA to your identity to sell it to insurance companies, etc?
- dspillett 3y ago
  I'm sure that is possible. But what ratio of the public actually would think of doing that?
- anjel 3y ago
  Ask one of the serial killers now rotting in jail thanks to 23andme!
  - bernawil 3y ago
    Was there ever a case of a convict getting caught by their direct DNA being found in one of these databases? I thought all cases where correlated from relatives. Government gets DNA sample, asks the databases: 'who do you know that's a genetic relative of this suspect?' and then they go and interrogate that person's every third cousin. You can't keep your family tree private, your birth certificate is out there. Opting out of 23andMe won't help you here.
    - runjake 3y ago
      A couple. One infamous case was the Golden State Killer[1] case. Though in that case, it was GEDmatch, not 23and me -- similar service, though. 1. https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Investigation https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Investig...
  - manxman 3y ago
    But that’s just it. You now get the 23 and me defence… my DNA data was hacked therefore there’s reasonable doubt the DNA linking me to the murder was synthesized from the 23 and me leak.

mixmastamyk 3y ago

Biometric auth being used more and more every day. Not hard to see requirements or and crime/impersonation in the future. Gattaca is still far off but one step closer than it was.

Eisenstein 3y ago

The fact that there is so much potential for the use of that information yet we haven't even started putting mechanisms in place to utilize it is what scares the hell out of me. If the threat model is 'to be determined' then especially when the data is being used commercially, for somewhat trivial reasons and without any substantial legal protections then the way to act is 'from my cold, dead, hands'. Just remember that no matter who in charge you think is neutral or bad or great, things change, attitudes change, shit happens (remember the Patriot Act?)... It isn't paranoid to say 'I don't trust the future, let's act cautiously instead of frivolously with things that have the potential to be extremely valuable to me, extremely impactful to society, and in which currently sits the greatest unexplored potential of this generation'.

manxman 3y ago
Cool so you going to wear gloves every time you eat out, touch a door, hold a glass etc.? You’re shedding DNA throughout the day. How is that fundamentally different?
- deleted 3y ago
  [deleted]
- Eisenstein 3y ago
  If I said I didn't want to go hunting with Dick Cheyney would you ask if I wore a bullet proof vest everywhere I went? When people look before walking into an intersection do you ask them if they erect bollards in front of their house? But ok. Next time you go in for surgery tell the doc not to wash their hands because you aren't a scaredy cat. Refusing to willingly take stupid risks is different than trying to live a life without them at all.

autoexec 3y ago

> how will my life be negatively impacted by this? Your would-be future employers may reject you because of this data. Why hire someone with a higher risk of certain diseases or disables? It'd be illegal, but companies don't care about breaking the law if it's profitable and it'd basically take a whistleblower for anyone to know it happened. They certainly won't tell you that's why you weren't hired. You could be denied housing or be targeted by extremists. More likely though, you'll be targeted by pharmaceutical companies. If the police didn't already have a copy of your DNA on file you might now have a place in every police line up, in any state in the US, for every crime committed where DNA evidence is collected. You could get wrongly flagged as a match through human error or statistics but either way it'll be on you to hire the lawyer who will have to prove your innocence. We're moving toward a digital caste system (several really) where the data governments and corporations have on you will determine what you're allowed to do, how much you'll pay for things, and what opportunities you'll have. Every scrap of data you surrender will be used against you by anyone willing to pay for it, used in whatever way they think will benefit them, at any time, and you'll probably never even realize what happened. Just like right now, where companies don't tell you that they used your personal data to determine how long to leave you on hold. There's no telling what kinds of harms this could bring you, and there's no taking your data back to prevent any of it either. I hope that data never comes back to haunt you. I'd sure hate to need to count on that never happening though.

nylonstrung 3y ago
This seems pretty far fetched. Do you really think a judge would allow a guilty verdict based on stolen genetic data obtained from a hacker? Do you really think braindead landlords and HR people would make decisions based on Promethease or whatever future tool replaces it? Monetarily the genetic data is marginally valuable at best, which is the same reasons 23andme revenue comes almost entirely from novelty-seeking consumers rather than industry.
- dspillett 3y ago
  > Do you really think braindead landlords and HR people Maybe that part is far fetched. But insurance people will make user off it I'm sure. By letting this data out there you might be opting in to higher costs, or hassle getting insurance at all, that way.

faeriechangling 3y ago

The breach affects those related to you and affects you multi-generationally so there’s a lot of time for the impact to materialize. There are strong financial incentives for genetic discrimination on the part of insurers and employers. There are also plenty of fascists are happy as a clam to discriminate against anybody with certain genes. If there’s any reason not to care, it’s not the lack of impact, it’s the impossibility of securing the data. I could sit here all day and convince you that you should care and then your cousin would get a dna analysis done and that would ultimately make all your caution mostly irrelevant. The only effective way to ensure genetic privacy is a legislative effort to control access to genetic databases, trying to avoid being put in such a database is only going to slow down how fast this happens.

deleted 3y ago

[deleted]

upwardbound 3y ago

Someday when DNA synthesis machines have enough write length to be able to synthesize entire human chromosomes, someone with your genome data could clone you without your consent. Even if this takes 50 years to become possible, you still might not want unauthorized clones of you being made using data that you gave up when you were younger.

kaba0 3y ago
As opposed to getting a bit of hair/dead skin from you, they rather hack into some digital system?
- 31337Logic 3y ago
  You don't hack into the system to obtain the data. You buy it. It's literally the most profitable thing on the planet right now.
keskival 3y ago
I hereby authorize any and all clones anyone ever wants to make out of my full DNA or parts thereof.
a_bonobo 3y ago
That's not possible with 23andMe data, they have 640,000 SNPs, not the entire genome/exome/methylome. They have 640k points where the genome is often different from others, but your own genome is 3Gbp long (3,000,000,000 basepairs) with usually a few million SNPs per person. 23andMe has a subset of the diversity in your genome.
- upwardbound 3y ago
  That's good to know. In that case, my concern would lie with the physical saliva samples that 23andMe has retained, since they could be comprehensively sequenced later.
  - a_bonobo 3y ago