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Had they known all their data was going to be sold later they may have reconsidered whether that service was worth it.
by sumeno 1y ago
Had they known all their data was going to be sold later they may have reconsidered whether that service was worth it.
- cheeseomlit 1y agoBased on my conversations with friends who paid for 23andMe they probably wouldn't have cared, and likely still don't. 23andMe customers are the kind of people who put Alexas in their bedroom
- rvnx 1y agoFrom Day 1, it was Google in the shadows of the company (due to the connection with Wojcicki), so it's obvious that a Google-connected company would try to monetize the data. Now that being said, when it was launched, 23andme was the only way to have very affordable and high-quality and reliable DNA scans. This data is very useful to improve your quality of life today using tools like Promethease. This to be weighted, against a risk that "potentially" someone may use maliciously in X or XX years. There is also the "risk" that they use this data to develop popular medicines that will actually help your long-term quality of life (if you can afford it).
- falcor84 1y agoThe big "risk" that I see is that this would bring into existence the world of GATTACA, where everyone's genetic information is open, and you might be, e.g. denied a job because they assessed that people with genes similar to yours are likely to do bad in such a role.
- moneywoes 1y agoany examples of quality of life improvements?
- vintermann 1y agoI don't buy any QoL improvements, but genealogy is a use case. For some of us, it is really meaningful and valuable to know who we're related to and how.
- benced 1y agoPrivacy advocates, by-and-large, don't engage with the fact that people are often willing to trade their data for value. Surely some people are under-informed and wouldn't if they fully understood the tradeoffs but there are some people who are fully informed and willing to make that tradeoff. The informed-tradeoff-makers opinions' matter exactly as much as the under-informed group's does.
- oarsinsync 1y agoI think if one estimates what percentage of people are uninformed vs what percentage of people are informed, the likely outcome is that the informed people are being heavily subsidised by the uninformed people (and being so well informed, are well aware of this fact, and thus actively work to encourage the status quo)
- Symmetry 1y agoOr even worse than putting a potentially compromised microphone in their bedroom, carry around a microphone in their pocket all day which is also definitely reporting its location to call companies.
- EGreg 1y agoIs 23andMe no longer going to provide matrilineal mitochondrial DNA analysis and haplogroups? It is a very valuable service if you’re Jewish, that others like Heritage.com don’t. Where can you get it otherwise?
- SSJPython 1y agoNo offense, but you have to be an idiot to not even consider the possibility that your data was going to be sold. What do they think they were going to do with the data? Just keep it safe in storage?
- sumeno 1y agoYour average person definitely thought that
- squigz 1y agoHow could they not? It was inevitable without data protection laws. Even if 23andme didn't go bankrupt, this would have happened as they chased more money - either directly selling the dataset, or "licensing" it I think people knew this would happen, eventually. The real question is whether they cared. To most people, protection and privacy of data like this is still an abstract concern. I suspect that won't change until a serious data leak happens or something along those lines - although I hope I'm wrong.
- micromacrofoot 1y agoPeople don't care so deeply that if you tried to explain it to the average person they'd be bored by the conversation. I one time tried to explain why someone should be concerned about their social security number being leaked in an exploit... and the reaction was "maybe they'll steal the student loans I'll never be able to pay"
- squigz 1y agoOne reason such issues are so abstract to so many people is because they have bigger things to worry about - like paying off debts. Worrying about things that, from their perspective, they can't change and doesn't directly affect them, isn't high on their list of things to do. Casually dismissing it is a way of coping.
- burnt-resistor 1y agoBecause Americans lack livable wages and a reason to hope. The economic royalists have won for now because they've successfully crushed the middle class and pushed people to desperation and belief in delusions rather than courageous, intelligent, honest, productive leaders.
- sumeno 1y agoIn the same way that people have "known" for decades that smoking causes cancer and smoked anyway, however efforts to keep that knowledge at the forefront of people's minds at the point of consumption by requiring extremely clear messaging on cigarette packaging (in countries other than the US) have been shown to decrease smoking rates. If these companies were required to put up a big banner before you check out saying "By purchasing this and giving us your data we have the right to sell it to whoever we want" with examples of how the data may be misused by bad actors people may think twice. Not everyone will, but I suspect it would be more effective than you think
- gchamonlive 1y agoI think this isn't the fundamental problem there, that it wasn't clear that your data would be up for sale, but the fact that this is even legal. I think the law should always protect the weaker party in any transaction from misuse of byproducts from that transaction.
- Symmetry 1y ago"We're going to take your genetic information and use it to develop new drugs" was certainly part of the pitch I was given to get me to join 23andme.
- gchamonlive 1y agoSo you agree "you should have been protected"? Or "tough luck, how's that working out for you"? I don't get what you mean.
- micromacrofoot 1y agoHave you been on the internet lately? almost no one cares about their data, most people share their behavior constantly every day to watch 30 second videos. Why would someone care whether or not it would be sold if they didn't care enough to provide their DNA to an unknown company to begin with? You're making an argument about a concern that doesn't even exist in the average person's head.
- vintermann 1y agoCompanies really do pay big money for browsing and other behavioral data, though. You'd think DNA data would be something even more valuable, but this bankruptcy and the relatively low price suggests that, no.