Anonymizing 23andMe request
November 29, 2017 5:17 AM Subscribe
I'd like to send a sample to 23andMe for testing but I don't want them to find out who I am and it shouldn't be any of their business.
Help me do this.
23andMe currently have a sale and I don't believe that their services we should be so cheap unless they were getting something else out of it. If I were malicious, I would be scrapping my request of all possible information from the client to sell to sell to secondary markets such as insurance companies.
however since I don't know what information they are going to strip from my request how can I, in turn anonymize my request as much as possible?
I was thinking that I could send it from my work address also leave the return address the blank
or use a pseudonym. I'm thinking that since the results would probably be available online I would check it with Tor or a VPN so they couldn't easily geolocate where I was.
Is this reasonable, or should I be doing more?
23andMe currently have a sale and I don't believe that their services we should be so cheap unless they were getting something else out of it. If I were malicious, I would be scrapping my request of all possible information from the client to sell to sell to secondary markets such as insurance companies.
however since I don't know what information they are going to strip from my request how can I, in turn anonymize my request as much as possible?
I was thinking that I could send it from my work address also leave the return address the blank
or use a pseudonym. I'm thinking that since the results would probably be available online I would check it with Tor or a VPN so they couldn't easily geolocate where I was.
Is this reasonable, or should I be doing more?
If anyone you are related to has sent in their DNA, they'll have a pretty good idea of who you are also, so if you want to stay totally anonymous don't send it in.
posted by TheAdamist at 5:50 AM on November 29, 2017 [3 favorites]
posted by TheAdamist at 5:50 AM on November 29, 2017 [3 favorites]
Are you afraid they'll come knocking on your door or something?
What they're getting out of this is the vast pool of customers who opt into the research program, which means the data is anonymized and used for drug development.
posted by extramundane at 5:58 AM on November 29, 2017 [15 favorites]
What they're getting out of this is the vast pool of customers who opt into the research program, which means the data is anonymized and used for drug development.
posted by extramundane at 5:58 AM on November 29, 2017 [15 favorites]
The point of these DNA companies is that they keep your DNA and DNA info IN PERPETUITY. You sign off on that when you send in your sample. They will not anonymize your personal data, particularly since a small part of the draw is finding out names/locations of those related to you.
Avoid this crap like the plague.
posted by kuanes at 7:39 AM on November 29, 2017 [2 favorites]
Avoid this crap like the plague.
posted by kuanes at 7:39 AM on November 29, 2017 [2 favorites]
23andMe's privacy policy and consent documents are publicly available and detail their process pretty thoroughly. If you don't trust that they'll keep their word, then your best option is to just not participate.
posted by mcfighty at 8:06 AM on November 29, 2017 [3 favorites]
posted by mcfighty at 8:06 AM on November 29, 2017 [3 favorites]
Call or email and ask if there is any option for anonymity. Yes, they'd have your DNA, but not connected to your name. Or maybe ask a friend if you can use their address and credit card.
posted by theora55 at 8:55 AM on November 29, 2017
posted by theora55 at 8:55 AM on November 29, 2017
I've sent them my DNA for ancestry reasons but also use the health feature. The drawbacks as I understood them at the time were worth it to the info I was able to glean. If you want to be truly anonymous, don't participate.
However, it would be easy to not have your name or current address attached to your sample. Caveat: I have no idea if any of this is a violation of their TOS, so take heed and proceed accordingly.
1. Set up a new email address used only for this.
2. Request a kit be sent to you at an address other than one directly attached to you.
3. Put a name that's not your own on the sample.
4. Mail it from a post office, even one in a state where 23andMe isn't legally allowed to ship. It will still get there.
5. Log into your account using your purpose-generated new email address and alternate name.
6. Once your ancestry results are ready, you will be able to see your DNA relatives. What they will see is that they are related to [alternate name you chose]. If 4th or 5th cousins (which you will certainly match with), it's unlikely either of you would even recognize each other's real names anyway. If something closer like a 2nd cousin or sibling or parent, then obviously questions about the alternate name would arise for them. They might even contact you to ask questions. However, you can avoid all this by avoiding sharing results in several different permutations, including not sharing health results, not sharing ancestry, etc. You can also not answer questions, even if you do share, by simply refusing to respond to messages sent through their private messaging system. They do not expose your email address or mailing address.
posted by ImproviseOrDie at 9:01 AM on November 29, 2017 [3 favorites]
However, it would be easy to not have your name or current address attached to your sample. Caveat: I have no idea if any of this is a violation of their TOS, so take heed and proceed accordingly.
1. Set up a new email address used only for this.
2. Request a kit be sent to you at an address other than one directly attached to you.
3. Put a name that's not your own on the sample.
4. Mail it from a post office, even one in a state where 23andMe isn't legally allowed to ship. It will still get there.
5. Log into your account using your purpose-generated new email address and alternate name.
6. Once your ancestry results are ready, you will be able to see your DNA relatives. What they will see is that they are related to [alternate name you chose]. If 4th or 5th cousins (which you will certainly match with), it's unlikely either of you would even recognize each other's real names anyway. If something closer like a 2nd cousin or sibling or parent, then obviously questions about the alternate name would arise for them. They might even contact you to ask questions. However, you can avoid all this by avoiding sharing results in several different permutations, including not sharing health results, not sharing ancestry, etc. You can also not answer questions, even if you do share, by simply refusing to respond to messages sent through their private messaging system. They do not expose your email address or mailing address.
posted by ImproviseOrDie at 9:01 AM on November 29, 2017 [3 favorites]
Yes, they'd have your DNA, but not connected to your name.
I really, really do not feel this is a meaningful distinction. You can give a company your name and reasonably expect they won't have access to your DNA as a result; vice versa is not true. There are any number of legal ways your identity could be triangulated or otherwise extrapolated, not to mention the illegal ones. I'm not suggesting that 23andMe as it operates currently is linking DNA to identity profiles, but your question seems to be posing the question of whether they could and that answer is yes, definitively.
Given your concerns as outlined above, I don't think you should opt into one of these services.
posted by superfluousm at 9:04 AM on November 29, 2017
I really, really do not feel this is a meaningful distinction. You can give a company your name and reasonably expect they won't have access to your DNA as a result; vice versa is not true. There are any number of legal ways your identity could be triangulated or otherwise extrapolated, not to mention the illegal ones. I'm not suggesting that 23andMe as it operates currently is linking DNA to identity profiles, but your question seems to be posing the question of whether they could and that answer is yes, definitively.
Given your concerns as outlined above, I don't think you should opt into one of these services.
posted by superfluousm at 9:04 AM on November 29, 2017
You can check out this if you think you can trust the Smarter Every Day guy: DNA Testing and Privacy (Behind the scenes at the 23andMe Lab) - Smarter Every Day 176
I bought my kit from Amazon, don't know if they have the full "track this serial-numbered box to the purchaser" or whether 23andMe could even get Amazon to go through the trouble of scanning every box sold. Or I'm fooling myself. :)
Otherwise, there was no personal information involved at all. Give a fake temporary email of some sort. All they really need is for you to remember the long series of digits on your tube. The samples themselves are handled by an external lab and there's an option when sending it in whether or not you want them to keep the sample or not.
They primarily seem to want you to let the lab keep your sample so they can run it again as they develop new tests, and for you to take surveys to help with the statistics. "I have the 90% no-dimples marker, but I have dimples", "my hair is actually more this color."... stuff like that because most of the findings from markers are just a rough probability distribution.
Turns out I have more Neandertal than 94% of other 23andMe users (woot), athlete muscles, I'm a toss-and-turn sleeper, and no strange medical risk markers that they can currently test for.
posted by zengargoyle at 2:58 PM on November 29, 2017 [1 favorite]
I bought my kit from Amazon, don't know if they have the full "track this serial-numbered box to the purchaser" or whether 23andMe could even get Amazon to go through the trouble of scanning every box sold. Or I'm fooling myself. :)
Otherwise, there was no personal information involved at all. Give a fake temporary email of some sort. All they really need is for you to remember the long series of digits on your tube. The samples themselves are handled by an external lab and there's an option when sending it in whether or not you want them to keep the sample or not.
They primarily seem to want you to let the lab keep your sample so they can run it again as they develop new tests, and for you to take surveys to help with the statistics. "I have the 90% no-dimples marker, but I have dimples", "my hair is actually more this color."... stuff like that because most of the findings from markers are just a rough probability distribution.
Turns out I have more Neandertal than 94% of other 23andMe users (woot), athlete muscles, I'm a toss-and-turn sleeper, and no strange medical risk markers that they can currently test for.
posted by zengargoyle at 2:58 PM on November 29, 2017 [1 favorite]
Response by poster: Thanks for all the info!
I sold my kit to someone else and decided not to go through with it.
posted by tedious at 4:29 AM on December 7, 2017
I sold my kit to someone else and decided not to go through with it.
posted by tedious at 4:29 AM on December 7, 2017
This thread is closed to new comments.
Also, your work address is still associated with you. Constructing a second, completely independent identity to remain anonymous is exceedingly difficult.
Your best option for remaining anonymous with 23andMe is to just not.
posted by paco758 at 5:46 AM on November 29, 2017 [27 favorites]