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This disaster is the perfect counter-argument to those always saying "why do you care so much about privacy. It doesn't affect you when I share things. You can
by skummetmaelk 3y ago
This disaster is the perfect counter-argument to those always saying "why do you care so much about privacy. It doesn't affect you when I share things. You can just choose not to do it", except no, I can't choose when we're relatives and you chose to share our genome.
It is so obvious that your relatives sharing their genomic data with 23andMe reveals a lot of information about you. We can only hope people will realize that this also holds true for collecting behavioural data on other people sharing the same background as you.
- fsckboy 3y agoI'm in favor of privacy, and I'm willing to go more out of my way to not share than the vast majority of people, but I'm also in favor of individual choice, and I can't think of a privacy model that would disallow other people from sharing their information just because you have some matching information.
- suslik 3y agoThat can be achieved through anonimity. I don't understand why companies have to know who I am in such detail. Every little website requires my phone number, SSN, retina patterns and the name of my childhood pet. If I could use 23andme under the pen name "Ivar the Boneless" and pay for it with a bit of cash in an envelope (or crypto), the current problem wouldn't exist. Tools like Telegram or Signal do not allow creating accounts without having a valid phone number. Of course, it is possible to use a web service to receive the registration SMS, but that shouldn't be the case in the first place.
- kfk 3y agoFYI, the police is able to find criminals now by finding DNA sequences similarities with your relatives. Not saying this is good or bad, I am just saying you don't know the extent of the impact to your personal freedom when your relative's DNA is shared.
- HenryBemis 3y agoWell they can narrow it down to the family, unless it was the very DNA giver that left that DNA sample on the scene of the crime. And since 23andme (as I assume others) don't do these anonymously, there is no hope. Unless people use someone as a proxy (i.e. I-1 give my sample to a male colleague to send it as his-2, he-2 gives his sample to someone else to send it as his-3, and so on..). Police would eventually find the guilty in case of a crime, but the 23andme's of this world will be selling confusing (wrong) data.
- stef25 3y agoThere are plenty of cases where DNA is found at the crime scene, run through a database, match is found with a relative. Then the cops start looking at the family and boom there's your shady uncle with priors they got their guy.
- quickthrower2 3y agoYes it has come up a few times on forensic files usually on cold cases.
- dylan604 3y agoIf this was someone trying to fly under the radar by using this scheme to buy burner phones or some such, sure. But this is literal DNA, so even in your attempts to obfuscate, they’d know the name and the sample do not line up, but then be able to link the sample to a family and then figure out who you really are
- pavel_lishin 3y agoThey can narrow it down to individual family members, based on how much DNA overlap there is.
- pfdietz 3y agoI can help track down distant family members who have committed crimes? Sounds like a plus. I think the angst about this comes from men who don't want their status as fathers of illegitimate children (or, rapists when they were younger) unmasked.
- skummetmaelk 3y agoI can think of an easy model. Disallow collection of personal information. Pull the rug out from under "services" which are really just data collection fronts turning a profit from selling your data instead of the primary service/good for money transaction. 23andMe could still have operated legally under this scheme. They could have done the analysis and sent you a printed sheet. But no, they had to store everything to be able to double dip by selling the data to pharma companies and whoever else would pay for it. If you can't turn a profit without underhandedly selling your users' data. You deserve to fail.
- mewpmewp2 3y agoWhat about people who would want to donate their data to further the research?
- seszett 3y agoThey can enrol in studies at actual (non-profit so they don't benefit from selling data, probably public funded) research institutes.
- acuozzo 3y ago> non-profit so they don't benefit from selling data Non-profit in the US is a tax status. Many CEOs of non-profits enjoy multi-million dollar salaries and bonuses.
- stef25 3y ago> Disallow collection of personal information It's all about the money, always. So not gonna happen.
- maxerickson 3y agoThey are frank about also selling the data for research, it is not underhanded. It's even opt in... For example, they talk about it on this page, which is linked from the about menu (so available with pretty small effort): https://www.23andme.com/research/ https://www.23andme.com/research/ I expect lots of people also like that they get updates when information about new markers becomes available.
- croes 3y agoBut if it's genetic information, it's not your data alone. It's your data, your parents' data, your childrens data etc.
- epicide 3y agoNobody has perfect 100% individual choice/freedom. By itself, maximizing for it is a non-argument. The best explanation I've heard is that "my rights end where yours begin (and vice versa)". That is not an easy line to draw, so the debate becomes where exactly do we, as a society, decide to draw that line. (Noting that this also is never a singular, fixed answer) Even without defining a specific model around how genetic data should be handled, I think it's more than fair to say that most people right now don't even consider how their choice to sign up for 23andme might affect their relatives (already born or otherwise). Even if they do, in my experience, it's only to a very surface-level degree.
- Melting_Harps 3y ago> This disaster is the perfect counter-argument to those always saying Personally speaking, I think Equihax was the better counter-argument; at least with 23andme YOU as a customer had to DECIDE to use their services and weigh the pros-cons of doing so, with Equihax I was forced into a rating system to determine my eligibility in a system that hoovers up any and all data sold to them by 3rd parties and holds all my personal information in order to complete anything from a loan application to a job application. And when found to have been breached no effective recourse was made, and instead of admitting fault to a very high probability of Identity theft being the end result a token 'credit system monitoring' service was offered, which once again relies on these credit agencies who share/distribute this information without my consent and created the problem are let off scot-free and never suffer any consequences. In short, it's a naive argument made from often ignorant and self-defeating practices that make others worse off because of their complacency and refusal to take privacy serious.
- skummetmaelk 3y agoCompletely true. However, Equifax was probably hard to wrap your head around. Whereas 23andme might seem a lot more personal and private to the average person. Of course, nothing is likely to come of this regardless.
- SAI_Peregrinus 3y agoNot identity theft. Libel. There's a high probability a bank will libel people whose info Equifax leaked. They'll do that because they depend solely on the same (largely public) data compaies like Equifax collect to identify loan applicants.
- envp 3y agoSure the customers decided, but what about their relatives? If any of my relatives uploaded their genetic info to this, it by extension has a huge part of my genetic info too, and my consent was decided without my knowlegde... What I'm trying to say is: I don't think comparing it to equifax is reasonable in that regard.
- adolph 3y agoTo clarify, genomic data was not reported stolen. It sounds like the breach was about genealogical data. The stolen data included the person’s name, birth year, relationship labels, the percentage of DNA shared with relatives, ancestry reports and self-reported location.
- illiac786 3y agoah, good point, I misread the bit “percentage of DNS shared with relatives”, I really thought one could share only Chromosome 3 with relatives for example (which does not make sense, granted), and that it was the bit which was stolen. Thanks for pointing this out.
- sandos 3y agoYes, and remember that data is commonly widely shared. Because, its mostly about long dead people? The real breach is for recently deceased people (here the time span varies greatly, but dead for ~100 years is definitely enough if you ask me) and for living people. Actually in Sweden the death info is publically available generally right away, more or less. You can buy USB sticks with ~all deaths up until very recently.
- losvedir 3y ago> This disaster is the perfect counter-argument to those always saying "why do you care so much about privacy. It doesn't affect you when I share things. You can just choose not to do it" While I agree it's a perfect counter-argument to that, is that what people always say? I'm not sure I've heard that argument as much as "why do you care so much about privacy?" full stop. As in, they don't really understand why anyone should care about privacy. And this isn't really a counter argument to that, any more than any other breach. And to be fair it's not really even a counter argument to that until you show the harm that came from it. What do you think will happen to people who had their ancestry data stolen here?
- mannykannot 3y agoYou are not likely to see the statement you are discussing unless you firstly somewhat frequently get into a situation where someone says something like "why do you care so much about privacy?" and then attempt to debate the issue. It is not necessary to show actual harm from this breach for it to defeat the tacit premise behind the statement you are discussing, which is that their profligacy with their personal data cannot, by itself, reveal any of your personal data.
- cj 3y agoI think the more common one I've heard is "Why do you care about privacy if you have nothing to hide?" In the case of 23andme, it's a perfect answer: We don't know what's hiding in our DNA and I don't know how people will use that against me in the future.
- pbhjpbhj 3y agoSo, the reason for privacy is because the profit motive of capitalism is not sufficiently restrained as to protect citizens from being abused by corporations?
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- spacebacon 3y agoMaybe we all shouldn’t be so Quic to create bad ideas.
- dylan604 3y agoRight, like the person posting an idea on an Internet forum was the first and only person to have that idea. Security through obscurity does not work. It’s much better to open up the curtains and let the sunlight in. It’s the best disinfectant. At least then everyone is working with all of the information.
- spacebacon 3y agoTouché, although people often identify what pharmacy they prescribe to with parroting other people’s phrases.
- spacebacon 3y agoBlinds open btw. I’m picking up what you are gracefully throwing down but not without checks and balances.
- dylan604 3y agoMy checks are bouncing off the heavily skewed balance. These internet posts are pretty much the only "checks and balances", and they do diddly squat.
- spacebacon 3y agoWritten word anywhere always records to the record.
- mejutoco 3y agoAgree. Alternatively: how much do you earn? Do you mind if I read your physical mail? Can I have a key to your home? I think it is difficult for some people to think about abstract ideas. When you bring it to the physical world everyone understands it is vexing.
- ekianjo 3y agonobody will listen to your counterargument. They don't care.
- hotpotamus 3y agoI guess I'm feeling a bit philosophical today, but in some sense, aren't we all part of a shared data structure given that we are all somewhat related? While there a few bits that make us individuals, there is much that is shared to the point that privacy doesn't seem truly possible.
- deleted 3y ago[deleted]
- WendyTheWillow 3y agoPlease provide one concrete example where this leaked information was used to materially impact someone's life that would not have otherwise been possible without the leak. Absent that, the argument holds that screeching declarations about privacy tend to be overblown.
- l33t7332273 3y agoWould it materially impact your life to send me a video each time you use the restroom? Probably not, but that doesn’t mean you’re comfortable with it being shared.
- WendyTheWillow 3y agoThat counts, can you show an example of this data being used in that way? In literally any way at all, has this data actually been used for anything?
- jabradoodle 3y agoIt's being sold illegally on the dark web; how do you propose we tell you how it's being used?
- WendyTheWillow 3y agoWhen something actually happens.
- illiac786 3y agothe classic counter argument here is “when something happens, it will be too late”.
- WendyTheWillow 3y agoYes but we tend to frown on precrime arrests.