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I'm annoyed at the presumption that I, as a customer, was not aware or on-board with what 23andMe is doing. I did. I'm happy to be part of this. I don't care th

by mabbo 5y ago

I'm annoyed at the presumption that I, as a customer, was not aware or on-board with what 23andMe is doing. I did. I'm happy to be part of this. I don't care that someone is making money because of it. I'm just glad that biomedical research to save lives is happening. Why is it a bad thing? And as a side benefit, through this system I got to meet my second cousin and tell her what my mother remembers about her now-passed-on grandmother (that literally happened last night and I'm still excited about it). I am a bit nervous about some of the 'we found the criminal by searching the company's DNA database' stuff. I think some regulation around that is needed. And perhaps 23andMe needs to make it more obvious to customers that they will do this research using the DNA. But as an informed consumer, I was happy to become a customer and participant in this fascinating system.

SQueeeeeL 5y ago
Cool, I'm glad that brought you joy. I wish they gave both of us a check box at the bottom of my spit test to opt in and everyone's happy. But they know at least half of their population would've opted out...
- michaeljohansen 5y ago
  23andMe provides checkboxes for everything you could want to change. Even better than checkboxes on a paper form, these are consents you can give / retract at any time: - https://you.23andme.com/user/edit/privacy/ https://you.23andme.com/user/edit/privacy/ - https://you.23andme.com/user/edit/research/ https://you.23andme.com/user/edit/research/ - https://you.23andme.com/user/edit/records/ https://you.23andme.com/user/edit/records/
  - falcolas 5y ago
    A shame your dad can’t opt out. Or your mom. Or their siblings and their children. And so forth.
- cblconfederate 5y ago
  You can go to the settings and opt out of their Research consent document now, which also explains how the data is used. I think they 've been pretty clear about how they plan to use the data of existing customers. There is also the danger of people having a false sense of privacy by opting out of 1 or 2 genetic tests. This is shared information between relatives and the population at large, not exactly top secret data. The degrees of separation between you and me are 2-3 , so it s very easy to identify people indirectly , hence why it was possible to solve decades-old crimes. I think our genetic information is less private than the contents of our brains, in general.
  - TedDoesntTalk 5y ago
    Meh, I sent them my spit with a fake name and a temp address at the UPS Store.
tyingq 5y ago
The trouble I see with this is that you may have exposed your relatives to T&C's they didn't agree to. Perhaps some future situation where a sibling gets to pay higher insurance rates or similar.
- andrei_says_ 5y ago
  Or becomes unable to get insurance (if in the US).
myself248 5y ago
What we haven't figured out, is how consent should work with the rest of your family, who share most of your DNA. Obviously your body is yours to give consent for, but you effectively dox your whole bloodline in doing so. I don't think there are easy answers here, but it's a conversation we should be having.
- ttymck 5y ago
  If we call that doxxing, isn't that the same as an identical twin who commits a crime being held liable for defamation of the twin who shares their face? Edit: Or, by the same token: a parent is liable for diluting the value of their siblings DNA because they passed that DNA on to children. I don't see this going anywhere.
  - totalZero 5y ago
    Not exactly, no. These are weak analogies. The second one doesn't make any sense to me at all. Maybe I'm missing something. It's like sharing your private key, knowing that others also use that private key. You immediately make a large portion of your family tree discoverable. It's the same underlying reason that we (most of us lol) treat revenge porn as a bad thing. You take someone else's blanket of privacy away without their consent.
- sombremesa 5y ago
  How come this is a complete non-concern in other areas? If you give anyone (say, PayPal) your address, you’ve given then your roommates’ address as well - since you share the same IP. Nobody cares, even though the third party can immediately begin identifying your roommates without harvesting their DNA, like they would in the case of 23andme.
  - falcolas 5y ago
    Giving your address to paypal doesn’t give paypal the addresses of everyone out to 3rd cousins (i.e. related via your great grandparents). There’s a slight difference.
  - 5y ago
bitL 5y ago
Would you like to have your DNA being used to manufacture a virus that only kills you/your family, based off DNA structure some 23andMe customer bought from them? Right now 23andMe might be the "good guys" like what Google used to be, but for how long?
- Tagbert 5y ago
  But what if that person is constructing the virus to kill everyone else but spare the ones with the submitted DNA? would that be OK? How far should we take this?
- soapdog 5y ago
  There are cheaper ways to kill a whole family as any organised crime boss will be happy to tell. Also, I don't like google either, but jumping from google used to be good too to your DNA will aid bioterrorism is kind of a far jump. People wanting to manufacture a virus, and who have the means to do so, don't need 23andMe database.

by mabbo 5y ago

SQueeeeeL 5y ago

Cool, I'm glad that brought you joy. I wish they gave both of us a check box at the bottom of my spit test to opt in and everyone's happy. But they know at least half of their population would've opted out...

michaeljohansen 5y ago
23andMe provides checkboxes for everything you could want to change. Even better than checkboxes on a paper form, these are consents you can give / retract at any time: - https://you.23andme.com/user/edit/privacy/ https://you.23andme.com/user/edit/privacy/ - https://you.23andme.com/user/edit/research/ https://you.23andme.com/user/edit/research/ - https://you.23andme.com/user/edit/records/ https://you.23andme.com/user/edit/records/
- falcolas 5y ago
  A shame your dad can’t opt out. Or your mom. Or their siblings and their children. And so forth.
cblconfederate 5y ago
You can go to the settings and opt out of their Research consent document now, which also explains how the data is used. I think they 've been pretty clear about how they plan to use the data of existing customers. There is also the danger of people having a false sense of privacy by opting out of 1 or 2 genetic tests. This is shared information between relatives and the population at large, not exactly top secret data. The degrees of separation between you and me are 2-3 , so it s very easy to identify people indirectly , hence why it was possible to solve decades-old crimes. I think our genetic information is less private than the contents of our brains, in general.
- TedDoesntTalk 5y ago
  Meh, I sent them my spit with a fake name and a temp address at the UPS Store.

tyingq 5y ago

The trouble I see with this is that you may have exposed your relatives to T&C's they didn't agree to. Perhaps some future situation where a sibling gets to pay higher insurance rates or similar.

andrei_says_ 5y ago
Or becomes unable to get insurance (if in the US).

myself248 5y ago

What we haven't figured out, is how consent should work with the rest of your family, who share most of your DNA. Obviously your body is yours to give consent for, but you effectively dox your whole bloodline in doing so. I don't think there are easy answers here, but it's a conversation we should be having.

ttymck 5y ago
If we call that doxxing, isn't that the same as an identical twin who commits a crime being held liable for defamation of the twin who shares their face? Edit: Or, by the same token: a parent is liable for diluting the value of their siblings DNA because they passed that DNA on to children. I don't see this going anywhere.
- totalZero 5y ago
  Not exactly, no. These are weak analogies. The second one doesn't make any sense to me at all. Maybe I'm missing something. It's like sharing your private key, knowing that others also use that private key. You immediately make a large portion of your family tree discoverable. It's the same underlying reason that we (most of us lol) treat revenge porn as a bad thing. You take someone else's blanket of privacy away without their consent.
sombremesa 5y ago
How come this is a complete non-concern in other areas? If you give anyone (say, PayPal) your address, you’ve given then your roommates’ address as well - since you share the same IP. Nobody cares, even though the third party can immediately begin identifying your roommates without harvesting their DNA, like they would in the case of 23andme.
- falcolas 5y ago
  Giving your address to paypal doesn’t give paypal the addresses of everyone out to 3rd cousins (i.e. related via your great grandparents). There’s a slight difference.
- 5y ago

bitL 5y ago

Would you like to have your DNA being used to manufacture a virus that only kills you/your family, based off DNA structure some 23andMe customer bought from them? Right now 23andMe might be the "good guys" like what Google used to be, but for how long?

Tagbert 5y ago
But what if that person is constructing the virus to kill everyone else but spare the ones with the submitted DNA? would that be OK? How far should we take this?
soapdog 5y ago
There are cheaper ways to kill a whole family as any organised crime boss will be happy to tell. Also, I don't like google either, but jumping from google used to be good too to your DNA will aid bioterrorism is kind of a far jump. People wanting to manufacture a virus, and who have the means to do so, don't need 23andMe database.