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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 b

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. Data is what lets us keep hospitals safe by establishing best practices, lets us cure diseases, lets us avoid unnecessary treatment, and just in general, separate fact from fiction. If we can't aggregate data, we can't do those things nearly as effectively as we could, and simplistic views of privacy have prevented this from happening. 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.)

discostrings 13y ago
> 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.
Silhouette 13y ago
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. That's a very one-sided view. Just this week, the latest attempt to do this in the UK, the care.data programme, essentially became so politically toxic that it's dead. This happened for a number of reasons. Some of them were just incompetence, like claiming everyone would receive a leaflet explaining the proposals and the right to opt out, and then finding that not only was your leaflet heavily criticised by medical and IT professionals for being woefully misleading, but when surveyed about 2/3 of adults reported not having seen it anyway. That was the credibility of the programme operators you saw falling down the sinkhole. However, other reasons for objecting would have stood up even if everyone were fully informed. The data in question wasn't actually going to be available to clinicians like doctors and nurses who might find it useful when providing care. And contrary to the laudible-sounding goals that some medical professionals have suggested, much like those you have been advocating yourself in this discussion, it also wasn't going to be restricted to people like medical researchers. In fact -- and it is now well-established, beyond-any-doubt, clear-as-day fact -- the data could never have been protected to the extent that was claimed (numerous qualified people have debunked the effectiveness of the claimed pseudonymisation), and the proposed rules and "safeguards" for who would have access to the data and for what purposes weren't even close to restricting it to legitimate medical research of the kind you describe. Those advocating the scheme at government level have once again demonstrated a fundamental lack of understanding of the implications of this kind of technology. There are a few other questions that seem to have been brushed under the carpet, too, like how opting out would supposedly mean your information never physically left your GP's systems, yet paradoxically there were circumstances discussed a couple of weeks ago where some organisations, like police and security services, would be able to access the data centrally via the new system anyway. The trouble with many of these privacy issues we've been discussing recently -- whether it's Google-esque creepy mass surveillance, or the NHS plans to consolidate and share particularly sensitive data about individuals, or governments monitoring surveillance networks -- is that they are all cases of Pandora's box. Once you've compelled people to give up privacy and they've been entered into someone's database, that data is out there, and it's subject to redistribution and repurposing at any future time, with or without the blessing of the data subjects. Our privacy laws are dangerously underweight and already fail to balance the heavyweight capabilities of modern technologies. Until that gets fixed -- and I mean fixed in the sense that privacy laws are actually enforced and respected at government level -- the only reasonable conclusion is that we should err on the side of caution with giving up personal data, and challenge every attempt to push the boundaries to make sure it's justified.

discostrings 13y ago

> 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.

Silhouette 13y ago

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. That's a very one-sided view. Just this week, the latest attempt to do this in the UK, the care.data programme, essentially became so politically toxic that it's dead. This happened for a number of reasons. Some of them were just incompetence, like claiming everyone would receive a leaflet explaining the proposals and the right to opt out, and then finding that not only was your leaflet heavily criticised by medical and IT professionals for being woefully misleading, but when surveyed about 2/3 of adults reported not having seen it anyway. That was the credibility of the programme operators you saw falling down the sinkhole. However, other reasons for objecting would have stood up even if everyone were fully informed. The data in question wasn't actually going to be available to clinicians like doctors and nurses who might find it useful when providing care. And contrary to the laudible-sounding goals that some medical professionals have suggested, much like those you have been advocating yourself in this discussion, it also wasn't going to be restricted to people like medical researchers. In fact -- and it is now well-established, beyond-any-doubt, clear-as-day fact -- the data could never have been protected to the extent that was claimed (numerous qualified people have debunked the effectiveness of the claimed pseudonymisation), and the proposed rules and "safeguards" for who would have access to the data and for what purposes weren't even close to restricting it to legitimate medical research of the kind you describe. Those advocating the scheme at government level have once again demonstrated a fundamental lack of understanding of the implications of this kind of technology. There are a few other questions that seem to have been brushed under the carpet, too, like how opting out would supposedly mean your information never physically left your GP's systems, yet paradoxically there were circumstances discussed a couple of weeks ago where some organisations, like police and security services, would be able to access the data centrally via the new system anyway. The trouble with many of these privacy issues we've been discussing recently -- whether it's Google-esque creepy mass surveillance, or the NHS plans to consolidate and share particularly sensitive data about individuals, or governments monitoring surveillance networks -- is that they are all cases of Pandora's box. Once you've compelled people to give up privacy and they've been entered into someone's database, that data is out there, and it's subject to redistribution and repurposing at any future time, with or without the blessing of the data subjects. Our privacy laws are dangerously underweight and already fail to balance the heavyweight capabilities of modern technologies. Until that gets fixed -- and I mean fixed in the sense that privacy laws are actually enforced and respected at government level -- the only reasonable conclusion is that we should err on the side of caution with giving up personal data, and challenge every attempt to push the boundaries to make sure it's justified.