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> This is a very myopic view that has already caused many deaths. Privacy concerns around medical records have prevented any central database of them from being

> This is a very myopic view that has already caused many deaths. Privacy concerns around medical records have prevented any central database of them from being built, and thus prevented us from saving all of the lives that could be saved by analyzing that data. This line of reasoning seems similar to arguing that, by not creating a society in which 95% of people live in sanitized hospital rooms and the remaining 5% of people are doctors and nurses, we have "already caused many deaths". Yes, the fact that people value things like "privacy", "being in large groups where others could be ill", and "moving from place to place" will "cause deaths". But that doesn't mean individuals should be forced to abandon these things for better health outcomes. While some benefits could certainly come from centralizing medical records, I tend to think that benefit cannot justify compelling people to keep their records in a centralized database, in the same way I don't think the health benefits of not traveling justify banning travel. You may not value privacy, but I think that in a truly inclusive society that values the individual, privacy should remain a real option for those who value it. > There are plenty of concerns about data, and plenty of ways of mitigating those concerns, but a blanket condemnation of any centralized data would hold humanity back immeasurably (and in fact, already has.) I agree that a blanket condemnation of centralized data is also not a good approach. Each individual should be able to make this choice in a meaningful way, with respect by default that any given person might care about it.

moultano 13y ago
It's a cost-benefit tradeoff like anything else. Unfortunately, the costs are filtered through fear-mongering and the benefits are trade secrets, so the debate is particularly ineffectual. The thing I find most aggravating about it is that the standard for harm for data seems to be "What could a totalitarian government do with it?" and there are very few useful things that couldn't be used for very bad things in the hands of a totalitarian government (newspapers, for instance.) Meanwhile, companies can't reveal all the useful things that are consequences of their data because that makes them vulnerable to both competitors and spam. So we're pretty much stuck with only uninformed opinions and worst-case scenario analysis, which isn't a rational way to approach anything. The only way I can think to improve the debate is for privacy advocates to focus on actual harm that has actually happened to someone to at least keep things grounded in reality.
- discostrings 13y ago
  Part of the problem is that privacy, at least in this context, is framed as a "debate" at all, rather than as a matter for individual choice. Some people would gladly share medical information for the greater good if asked. You'd have to pry it from the cold, dead hands of others. The problem is that we currently don't separate those who would like to provide their information from those who would like to refuse because we're greedy for as much information as we can get, or we don't trust people to make the "right" decision. A system that worked well and that accomodated both views would be one that really respected a user's choice--one that could handle data in a centralized or individual fashion, accordingly. Data that was willingly given could be used under the terms of the agreement without risk of angering people who don't want their data to be analyzed. It would ultimately provide the same benefits while respecting individuals and not creating controversy. In the medical records situation, you'd have a group of people at one end that would be quite pleased to contribute their information, a group at the other end that would immediately decline, and quite a few people in the middle who would likely fall somewhat evenly to either side. Sure, some people would probably be fear-mongered out of sharing, but I imagine there'd be a lot less of that going on if people knew they could actually make a meaningful individual choice for privacy if they chose to do so. When opt-outs are buried, hidden, and it's not clear that they actually work, skepticism and fear grow. In a system that doesn't try to railroad people to sacrifice their privacy--a system that actually respects the individual's choice--fear would be reduced. The only way to cast questions around this type of privacy as "a debate" involves changing the issue to compelled sharing of personal information. In a debate over forced participation, I think it's pretty easy to see why thoughts start to drift towards totalitarian concerns. I think a system that offered real choice for each individual may drastically reduce the current problems from both perspectives, at the price of some engineering overhead.
  - moultano 13y ago
    A few points. There isn't any coercion going on with any of the things we're talking about. Every technology product has at least the choice to not use it. It's quite difficult to ask meaningful questions about what users are comfortable with, get meaningful answers, and then figure out how the answer they've already given applies to a grey area situation where the cost of getting it wrong is a lawsuit. It becomes no longer sufficient to treat the data with respect and only use it for beneficial and privacy respecting purposes. You now have to constrain it by another set of rules whose relationship to what's actually happening can be unclear and arbitrary. Some products work without storing any data. Most don't. For those that require user data to fulfill their basic function, the engineering cost of exempting certain data from certain systems can be much higher. One programmer screwing up becomes a lawsuit. This is essentially the situation with HIPAA. Everyone is too worried about liability to do anything innovative, so that sector doesn't improve. If someone is actually harmed by something a company does with user data, then it's entirely appropriate to stop patronizing that company, or to claim damages through all the normal routes. The presumption of not trusting anyone with data in advance of any actual harm is what I object to. Data can do real and permanent good in the world, and some companies are worth trusting (particularly since all of their incentives are to remain trustworthy if they want to continue to exist.)

moultano 13y ago

It's a cost-benefit tradeoff like anything else. Unfortunately, the costs are filtered through fear-mongering and the benefits are trade secrets, so the debate is particularly ineffectual. The thing I find most aggravating about it is that the standard for harm for data seems to be "What could a totalitarian government do with it?" and there are very few useful things that couldn't be used for very bad things in the hands of a totalitarian government (newspapers, for instance.) Meanwhile, companies can't reveal all the useful things that are consequences of their data because that makes them vulnerable to both competitors and spam. So we're pretty much stuck with only uninformed opinions and worst-case scenario analysis, which isn't a rational way to approach anything. The only way I can think to improve the debate is for privacy advocates to focus on actual harm that has actually happened to someone to at least keep things grounded in reality.

discostrings 13y ago
Part of the problem is that privacy, at least in this context, is framed as a "debate" at all, rather than as a matter for individual choice. Some people would gladly share medical information for the greater good if asked. You'd have to pry it from the cold, dead hands of others. The problem is that we currently don't separate those who would like to provide their information from those who would like to refuse because we're greedy for as much information as we can get, or we don't trust people to make the "right" decision. A system that worked well and that accomodated both views would be one that really respected a user's choice--one that could handle data in a centralized or individual fashion, accordingly. Data that was willingly given could be used under the terms of the agreement without risk of angering people who don't want their data to be analyzed. It would ultimately provide the same benefits while respecting individuals and not creating controversy. In the medical records situation, you'd have a group of people at one end that would be quite pleased to contribute their information, a group at the other end that would immediately decline, and quite a few people in the middle who would likely fall somewhat evenly to either side. Sure, some people would probably be fear-mongered out of sharing, but I imagine there'd be a lot less of that going on if people knew they could actually make a meaningful individual choice for privacy if they chose to do so. When opt-outs are buried, hidden, and it's not clear that they actually work, skepticism and fear grow. In a system that doesn't try to railroad people to sacrifice their privacy--a system that actually respects the individual's choice--fear would be reduced. The only way to cast questions around this type of privacy as "a debate" involves changing the issue to compelled sharing of personal information. In a debate over forced participation, I think it's pretty easy to see why thoughts start to drift towards totalitarian concerns. I think a system that offered real choice for each individual may drastically reduce the current problems from both perspectives, at the price of some engineering overhead.
- moultano 13y ago
  A few points. There isn't any coercion going on with any of the things we're talking about. Every technology product has at least the choice to not use it. It's quite difficult to ask meaningful questions about what users are comfortable with, get meaningful answers, and then figure out how the answer they've already given applies to a grey area situation where the cost of getting it wrong is a lawsuit. It becomes no longer sufficient to treat the data with respect and only use it for beneficial and privacy respecting purposes. You now have to constrain it by another set of rules whose relationship to what's actually happening can be unclear and arbitrary. Some products work without storing any data. Most don't. For those that require user data to fulfill their basic function, the engineering cost of exempting certain data from certain systems can be much higher. One programmer screwing up becomes a lawsuit. This is essentially the situation with HIPAA. Everyone is too worried about liability to do anything innovative, so that sector doesn't improve. If someone is actually harmed by something a company does with user data, then it's entirely appropriate to stop patronizing that company, or to claim damages through all the normal routes. The presumption of not trusting anyone with data in advance of any actual harm is what I object to. Data can do real and permanent good in the world, and some companies are worth trusting (particularly since all of their incentives are to remain trustworthy if they want to continue to exist.)