Should I use my real name with 23andme?
December 28, 2023 8:47 AM Subscribe
Their terms of agreement say yes, but with the recent security issues, I'm a little reluctant. What upside is there with giving them my real name vs using a proxy name.
One thing would be that if you ever wanted to use the data in the real world (medical or familial), you would need to convince the other party that the real you is the same as the person with the other name. You might want to check the contract's fine print on reissuing reports for name changes.
posted by beaning at 9:55 AM on December 28, 2023 [1 favorite]
posted by beaning at 9:55 AM on December 28, 2023 [1 favorite]
I would not use my real name. I hate that they don't keep data private, so I would not choose to facilitate that.
posted by theora55 at 10:02 AM on December 28, 2023 [2 favorites]
posted by theora55 at 10:02 AM on December 28, 2023 [2 favorites]
Not sure why my comment was deleted, but maybe it's because of the flippant suggestion at the end. Anyway:
My point was: if enough, or the right, relative(s) are in "The Database", they -- or anyone else -- can easily figure out who you are no matter what name you give them.
(The only way to win is not to play.) (And even then, there's no real way out if enough other people play.)
posted by amtho at 10:08 AM on December 28, 2023 [8 favorites]
My point was: if enough, or the right, relative(s) are in "The Database", they -- or anyone else -- can easily figure out who you are no matter what name you give them.
(The only way to win is not to play.) (And even then, there's no real way out if enough other people play.)
posted by amtho at 10:08 AM on December 28, 2023 [8 favorites]
Well, you'll confuse the heck out of your family when they discover they have an extra child/sibling/cousin they didn't know about. Just something to be aware of.
posted by Lady Li at 10:09 AM on December 28, 2023 [7 favorites]
posted by Lady Li at 10:09 AM on December 28, 2023 [7 favorites]
What do you want to use 23 and Me for? If you just want to look at your ancestry percentage estimates and traits sections then you don't need to use your real name. However, if you want to build your family tree and make connections with relatives then you will likely have better success using your real name. Keep in mind that if you purchased the kit with a credit card then your name is already associated with your account - so not safe from law enforcement (not that it is anyway, as amtho's comment explained).
You don't have to share your DNA data with anyone - you can easily turn that setting off. It's my understanding that the hacker accessed data that users had chosen to share with their relatives on the service.
posted by Stoof at 10:48 AM on December 28, 2023
You don't have to share your DNA data with anyone - you can easily turn that setting off. It's my understanding that the hacker accessed data that users had chosen to share with their relatives on the service.
posted by Stoof at 10:48 AM on December 28, 2023
You don't have to share your DNA data with anyone - you can easily turn that setting off. It's my understanding that the hacker accessed data that users had chosen to share with their relatives on the service.
Guys, once the data exists, and is aggregated, not only is it an attractive target for "hackers", it's an attractive asset for a LOT of different entities, and they can access that through legal proceedings, business acquisition, outright purchase if a company goes bankrupt, changing the laws of the land, various funded agencies, or just changing the law to make it either permissable or mandatory. There is zero reason to believe things will stay as they are now.
I am not saying "give up, this is the way things are going". There is zero reason to believe you have no power or say -- in fact, all of what I describe above comes from people who are influenced by other people. Be conscious of your influence, and the power of your personal choice, and the power of talking about your personal choice.
Which brings us back to the original question: should you use your given name. If you must do this, and there are a lot of potential reasons one would need to, the name you use is a tiny choice you can still make. It could be one way of saying "aggregating this information about real people is not really OK with me". It sends a different message than "hey everybody seems to feel fine with this."
Maybe it wouldn't register with anyone right now, but someday soon someone will study this in aggregate, and it might not be too hard to deduce that lots of people are sufficiently skeeved to make at least some gesture toward privacy.
posted by amtho at 12:03 PM on December 28, 2023 [7 favorites]
Guys, once the data exists, and is aggregated, not only is it an attractive target for "hackers", it's an attractive asset for a LOT of different entities, and they can access that through legal proceedings, business acquisition, outright purchase if a company goes bankrupt, changing the laws of the land, various funded agencies, or just changing the law to make it either permissable or mandatory. There is zero reason to believe things will stay as they are now.
I am not saying "give up, this is the way things are going". There is zero reason to believe you have no power or say -- in fact, all of what I describe above comes from people who are influenced by other people. Be conscious of your influence, and the power of your personal choice, and the power of talking about your personal choice.
Which brings us back to the original question: should you use your given name. If you must do this, and there are a lot of potential reasons one would need to, the name you use is a tiny choice you can still make. It could be one way of saying "aggregating this information about real people is not really OK with me". It sends a different message than "hey everybody seems to feel fine with this."
Maybe it wouldn't register with anyone right now, but someday soon someone will study this in aggregate, and it might not be too hard to deduce that lots of people are sufficiently skeeved to make at least some gesture toward privacy.
posted by amtho at 12:03 PM on December 28, 2023 [7 favorites]
Keep in mind that there are many ways to connect you to your data account regardless of the name you use. As mentioned, the credit card, shipping address and log-in info that you use all connect you to the data. And there have been some studies that connected people to data based solely on timing and location of kits sent and received back. EFF has some thoughts on how to protect yourselft at this level.
And as for selling the data and other privacy issues, 23 and Me already sells de-identified data unless you expressly opt out. But without knowing the specific protocols, I'm a bit suspicious of how stringently this holds. OTOH, the individual DNA results of the vast majority of people are just not that interesting to the average hacker at this time. Biowarfare might make it more interesting but again, probably nothing at the individual level vs the aggregate.
As noted above, the best way to ensure privacy is not to play the game. Keep in mind that depending on your ethnicity and purpose in doing this, the results may not actually be that accurate or change anything you already know.
posted by beaning at 1:27 PM on December 28, 2023 [2 favorites]
And as for selling the data and other privacy issues, 23 and Me already sells de-identified data unless you expressly opt out. But without knowing the specific protocols, I'm a bit suspicious of how stringently this holds. OTOH, the individual DNA results of the vast majority of people are just not that interesting to the average hacker at this time. Biowarfare might make it more interesting but again, probably nothing at the individual level vs the aggregate.
As noted above, the best way to ensure privacy is not to play the game. Keep in mind that depending on your ethnicity and purpose in doing this, the results may not actually be that accurate or change anything you already know.
posted by beaning at 1:27 PM on December 28, 2023 [2 favorites]
Unfortunately, there's not really a way to opt out completely if your family members are doing this. So talk to them please. Talk more in general.
posted by amtho at 3:25 PM on December 28, 2023 [1 favorite]
posted by amtho at 3:25 PM on December 28, 2023 [1 favorite]
I'd like to echo amtho's strong reservations about believing that the privacy regime we currently 'enjoy' is going to stay the same forever. Also, that the more people that are related to you who participate in these services, the more likely that you will be highly identifiable, fake name or no. I am not aware of any right to be forgotten in these companies databases (and how would you even audit that?) so submitting your DNA is a one way ticket, uncancellable.
So, yeah, unless you have an incredibly compelling personal use case for this information, I would just entirely skip giving my DNA to be sequenced by a private entity.
posted by Cold Lurkey at 4:14 PM on December 28, 2023 [3 favorites]
So, yeah, unless you have an incredibly compelling personal use case for this information, I would just entirely skip giving my DNA to be sequenced by a private entity.
posted by Cold Lurkey at 4:14 PM on December 28, 2023 [3 favorites]
Oh, and also: it doesn't matter whether your relatives _already_ have been processed. If they are added in the future, you'll be easily identifiable.
Also, your own addition makes it easier to identify your relatives.
Not just identify them, but discern whether they're likely to have various physical traits and conditions. Which probably corresponds to their probability of certain kinds of achievements and their likely cost to health insurers.
posted by amtho at 5:22 PM on December 28, 2023 [1 favorite]
Also, your own addition makes it easier to identify your relatives.
Not just identify them, but discern whether they're likely to have various physical traits and conditions. Which probably corresponds to their probability of certain kinds of achievements and their likely cost to health insurers.
posted by amtho at 5:22 PM on December 28, 2023 [1 favorite]
I just logged in to confirm that this is still the case: it lets you change your name freely without any verification needed, first and last both as well as setting an independent "display name." Just as some information for your consideration.
A possible upside (depending on what you care about), since that's what you asked for: even knowing your biological relationship to someone, hypothetical relatives are going to be much more wary of contacting an unknown match than a name they even sort of recognize. Basically every guide to genetic genealogical research I've read is full of cautions about approaching unknown matches, and it's very easy to decide to just leave such people be. If you actually want people to connect with you, having at least your actual initials or part of a real surname would be higher-yield than choosing something opaque and assuming that anyone who's interested will just ask.
posted by teremala at 8:53 AM on December 29, 2023
A possible upside (depending on what you care about), since that's what you asked for: even knowing your biological relationship to someone, hypothetical relatives are going to be much more wary of contacting an unknown match than a name they even sort of recognize. Basically every guide to genetic genealogical research I've read is full of cautions about approaching unknown matches, and it's very easy to decide to just leave such people be. If you actually want people to connect with you, having at least your actual initials or part of a real surname would be higher-yield than choosing something opaque and assuming that anyone who's interested will just ask.
posted by teremala at 8:53 AM on December 29, 2023
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posted by Reverend John at 9:28 AM on December 28, 2023