5 ms·

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what

by op00to 11y ago

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

breck 11y ago
If everyone had that attitude we'd still be using horses to get from point A to point B. :)
- x0x0 11y ago
  Yeah, but Ford didn't offer any pig who could dig up a compliant judge the ability to go spelunking through the dna of myself and all my relatives.
- op00to 11y ago
  I don't follow your analogy. How does technological advancement in transportation relate to the privacy and security of our own genomes?
  - breck 11y ago
    Early adopters accept risks that op calls "idiotic" because they believe in potential benefits of new tech. Without those early adopters we would not have new tech.
aeturnum 11y ago
We're still in the infancy of diagnosing psychological state through word choice, yet uninformed people still talk to other people over chat. We're still in the infancy of detecting disease through microbiome analysis, yet some foolish people still meet in person without signed contracts not to collect that information. We're still in the infancy of analyzing video to detect mental state, yet people routinely go out into public without comprehensive agreements not to record or analyze their behavior. I understand your concern about genetic information, as it's easy to understand the impact and the potential information gleaned. That said, the cost v.s. risks v.s. benefit of the 23andme service work for me - though I would not say that they should work for anyone else. It's good to think about potential future risks, but believing too much in the malevolence and competence of people from the future is often a mistake (see: lots of cold war policies).
- op00to 11y ago
  Sorry, can't trust anything Google backed. Still really sore about Google Reader. :)
- andrepd 11y ago
  There's a massive difference in the order ofd magnitude of information acquired by recording people's body language vs legally handing them over your genome. That sort of apples to oranges comparison does nothing for the argument.
nathas 11y ago
I see it as helping myself future-proof myself. If I know I have inherent risks as I age, or worse, genetic mutations that could passed to my children, personally it's worth the possible data abuse to me. It would be very unfortunate if this turns into Gattaca though.
- op00to 11y ago
  This is a great idea, but the general advice you get is the same thing your doctor is telling you - lose weight, lower blood pressure, wear sunblock. For specific issues you could pass down to your kids, there are physician-ordered genetic tests. The real "killer app" right now for personal genetics has to do with pharmaceuticals - how well does my body handle Warfarin, etc. That's a great application, and something that I think is better ordered by a physician at the point where you'd need to know that information.
- lordCarbonFiber 11y ago
  This is tangential to your post, but, everyone that watched Gattaca in high school and remember it as a good, thought provoking movie needs to sit down and watch it again. Gattaca is a terrible movie both from a general plot and from a scientific perspective. When the "hero" of a movie is the jackass that cons his way onto a crucial role in a space mission knowing it will kill him and leave the crew a man down, it's probably prudent to start asking questions about the other aspects. As far as we can determine the genetics for ambiguous traits like intelligence or physical ability are deeply complex and cross coupled things and it grinds my gears to have the "but Gattaca" crowd crawl out of the wood work everytime for topics like research into preventing recessive diseases like cystic fibrosis comes up.
deleted 11y ago
[deleted]
toomuchtodo 11y ago
> It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. My genome is public on Harvard's Personal Genome's Project [+]; why would I care what 23andme does with my data? [+] http://www.personalgenomes.org/ http://www.personalgenomes.org/
- unclebucknasty 11y ago
  Which one makes the other a good idea?
- dekhn 11y ago
  I've also published my genome along with my name. https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C
adenadel 11y ago
There is no concept of "genome security" because you leave your genome everywhere you've ever been. If someone wants your genome and is willing to spend the money to sequence it, they've got it. Let's estimate 6pg of DNA per cell and that we need 100ng of DNA for sequencing. Rounded up that means 20000 cells left behind. That means you cannot leave a single hair, fingernail clipping, feces, etc anywhere that you do not trust to destroy them.
- nitrogen 11y ago
  There's a massive difference between chasing down one person's DNA and gaining unwarranted access to a consolidated database of millions of genomes.
  - lordCarbonFiber 11y ago
    I'd pose the question, why? From a personal privacy perspective you have a lot more to worry about from the determined actor targeting you than a data breach in which your genome (likely not even linked to any other PII if they have set up their database correctly) is just another entry in a sea of data. On the other side of the the coin, those individually worthless genomes could become valuable to the furthering of medical science if you can collect them in mass and start to look at statistical trends.
    - nitrogen 11y ago
      You have to multiply the expected cost of a privacy violation by the probability of that violation. A targeted attack is exceptionally rare for the vast majority of people. But in a dragnet, the probability is essentially 1. We can have the benefits of statistical research on our private information without handing the keys to the kingdom over to malicious actors.
sskates 11y ago
People said the same thing about putting their photos on the internet in the early days and now there are massive companies dedicated to it.
dkbrk 11y ago
> 23andMe can do whatever they want with your data This isn't correct. 23andMe are quite expliict about how genomic data may be used in their [privacy policy](https://www.23andme.com/about/privacy/#jump-link-content-content-how-we-use-and-share-information https://www.23andme.com/about/privacy/#jump-link-content-con...). Research using your genetic data only occurs with your permission, and it's stripped of personally identifying information (i.e presented in aggregate) when delivered to third parties. 23andMe can't, for example, sell your genome to an insurance company. 23andMe don't have a fiduciary responsibility to protect your data, they have legal one. If you still find this overly concerning, you could just use 23andMe's genetic sequencing, which when I last checked was priced at below cost, download the data and tell 23andMe to delete all personal information. Once you have the genetic data, there are many options for performing analytics. For example https://www.promethease.com/ https://www.promethease.com/ which uses SNPedia and isn't under the same FDA scrutiny as 23andMe and doesn't have to self-censor.
dekhn 11y ago
Cam you articulate a coherent risk to an individual based on freely shared genomic information? Be specific in a way that could be used to make a decision.

by op00to 11y ago

breck 11y ago

If everyone had that attitude we'd still be using horses to get from point A to point B. :)

x0x0 11y ago
Yeah, but Ford didn't offer any pig who could dig up a compliant judge the ability to go spelunking through the dna of myself and all my relatives.
op00to 11y ago
I don't follow your analogy. How does technological advancement in transportation relate to the privacy and security of our own genomes?
- breck 11y ago
  Early adopters accept risks that op calls "idiotic" because they believe in potential benefits of new tech. Without those early adopters we would not have new tech.

aeturnum 11y ago

We're still in the infancy of diagnosing psychological state through word choice, yet uninformed people still talk to other people over chat. We're still in the infancy of detecting disease through microbiome analysis, yet some foolish people still meet in person without signed contracts not to collect that information. We're still in the infancy of analyzing video to detect mental state, yet people routinely go out into public without comprehensive agreements not to record or analyze their behavior. I understand your concern about genetic information, as it's easy to understand the impact and the potential information gleaned. That said, the cost v.s. risks v.s. benefit of the 23andme service work for me - though I would not say that they should work for anyone else. It's good to think about potential future risks, but believing too much in the malevolence and competence of people from the future is often a mistake (see: lots of cold war policies).

op00to 11y ago
Sorry, can't trust anything Google backed. Still really sore about Google Reader. :)
andrepd 11y ago
There's a massive difference in the order ofd magnitude of information acquired by recording people's body language vs legally handing them over your genome. That sort of apples to oranges comparison does nothing for the argument.

nathas 11y ago

I see it as helping myself future-proof myself. If I know I have inherent risks as I age, or worse, genetic mutations that could passed to my children, personally it's worth the possible data abuse to me. It would be very unfortunate if this turns into Gattaca though.

op00to 11y ago
This is a great idea, but the general advice you get is the same thing your doctor is telling you - lose weight, lower blood pressure, wear sunblock. For specific issues you could pass down to your kids, there are physician-ordered genetic tests. The real "killer app" right now for personal genetics has to do with pharmaceuticals - how well does my body handle Warfarin, etc. That's a great application, and something that I think is better ordered by a physician at the point where you'd need to know that information.
lordCarbonFiber 11y ago
This is tangential to your post, but, everyone that watched Gattaca in high school and remember it as a good, thought provoking movie needs to sit down and watch it again. Gattaca is a terrible movie both from a general plot and from a scientific perspective. When the "hero" of a movie is the jackass that cons his way onto a crucial role in a space mission knowing it will kill him and leave the crew a man down, it's probably prudent to start asking questions about the other aspects. As far as we can determine the genetics for ambiguous traits like intelligence or physical ability are deeply complex and cross coupled things and it grinds my gears to have the "but Gattaca" crowd crawl out of the wood work everytime for topics like research into preventing recessive diseases like cystic fibrosis comes up.

deleted 11y ago

[deleted]

toomuchtodo 11y ago

> It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. My genome is public on Harvard's Personal Genome's Project [+]; why would I care what 23andme does with my data? [+] http://www.personalgenomes.org/ http://www.personalgenomes.org/

unclebucknasty 11y ago
Which one makes the other a good idea?
dekhn 11y ago
I've also published my genome along with my name. https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C

adenadel 11y ago

There is no concept of "genome security" because you leave your genome everywhere you've ever been. If someone wants your genome and is willing to spend the money to sequence it, they've got it. Let's estimate 6pg of DNA per cell and that we need 100ng of DNA for sequencing. Rounded up that means 20000 cells left behind. That means you cannot leave a single hair, fingernail clipping, feces, etc anywhere that you do not trust to destroy them.

nitrogen 11y ago
There's a massive difference between chasing down one person's DNA and gaining unwarranted access to a consolidated database of millions of genomes.
- lordCarbonFiber 11y ago
  I'd pose the question, why? From a personal privacy perspective you have a lot more to worry about from the determined actor targeting you than a data breach in which your genome (likely not even linked to any other PII if they have set up their database correctly) is just another entry in a sea of data. On the other side of the the coin, those individually worthless genomes could become valuable to the furthering of medical science if you can collect them in mass and start to look at statistical trends.
  - nitrogen 11y ago
    You have to multiply the expected cost of a privacy violation by the probability of that violation. A targeted attack is exceptionally rare for the vast majority of people. But in a dragnet, the probability is essentially 1. We can have the benefits of statistical research on our private information without handing the keys to the kingdom over to malicious actors.

sskates 11y ago

People said the same thing about putting their photos on the internet in the early days and now there are massive companies dedicated to it.

dkbrk 11y ago

> 23andMe can do whatever they want with your data This isn't correct. 23andMe are quite expliict about how genomic data may be used in their [privacy policy](https://www.23andme.com/about/privacy/#jump-link-content-content-how-we-use-and-share-information https://www.23andme.com/about/privacy/#jump-link-content-con...). Research using your genetic data only occurs with your permission, and it's stripped of personally identifying information (i.e presented in aggregate) when delivered to third parties. 23andMe can't, for example, sell your genome to an insurance company. 23andMe don't have a fiduciary responsibility to protect your data, they have legal one. If you still find this overly concerning, you could just use 23andMe's genetic sequencing, which when I last checked was priced at below cost, download the data and tell 23andMe to delete all personal information. Once you have the genetic data, there are many options for performing analytics. For example https://www.promethease.com/ https://www.promethease.com/ which uses SNPedia and isn't under the same FDA scrutiny as 23andMe and doesn't have to self-censor.

dekhn 11y ago

Cam you articulate a coherent risk to an individual based on freely shared genomic information? Be specific in a way that could be used to make a decision.