5 ms·

This reminds me of something Larry Page said at TED this year: I say, wouldn't it be amazing if everyone's medical records were available anonymously to resear

This reminds me of something Larry Page said at TED this year: I say, wouldn't it be amazing if everyone's medical records were available anonymously to research doctors? And when someone accesses your medical record, a research doctor, they could see, you could see which doctor accessed it and why, and you could maybe learn about what conditions you have. I think if we just did that, we'd save 100,000 lives this year. So I guess I'm just very worried that with Internet privacy, we're doing the same thing we're doing with medical records, is we're throwing out the baby with the bathwater, and we're not really thinking about the tremendous good that can come from people sharing information with the right people in the right ways. Source: https://www.youtube.com/watch?v=mArrNRWQEso&t=839 https://www.youtube.com/watch?v=mArrNRWQEso&t=839 at 14:00.

deleted 12y ago
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angersock 12y ago
Yeah, 'cause Google and Facebook, with all of their extensive online surveillance and profiling, have done such a bangup job giving me ads I care about. Fuck that. EDIT: Seriously, if the yardstick is "but but but think of all the great things we could do, just like we have with the internet" I'm going to request proof that we've in fact accomplished that tremendous good in terms of advertising and whatnot. If they can't even show that for their main line of business, any claims about medicine seem shaky, no?
jacquesm 12y ago
I agree with Larry, at the same time google is one of the last companies on the planet that I would trust with that data. Much of this internet privacy backlash is aimed specifically at Google and Facebook (and of course the NSA, but let's assume that they don't have any problems getting to your medical data anyway).
- jkn 12y ago
  Why is that? The data are anonymized. But then even if they weren't anonymized, I think Google would be one of the company I would trust the most for that. They know what they're doing in terms of security and of all the companies that know a lot about me, they're the one who consistently delivered great value from the data they have. I'm thinking of things like search, Google Now and the maps interface for my location history. Plus I'm happy that the monetization of my data serves to fund great projects like this one. It didn't have to be so...
  - jacquesm 12y ago
    Anonymizing data is a lot harder than it seems at first glance. So far any large enough dataset that was deemed to be properly anonymized has been used to prove the opposite by identifying individuals. The only way you can properly anonymize such data is by reducing it to aggregates but then most of the utility is lost. Taking the combination of google search data and medical data it would not at all be hard to tie some of the searches (and thus identified users) to medical records. Especially not if the diseases / symptoms are rare.
  - throwaway2048 12y ago
    Even anonimized data that seems very generic and nonspecific, when corolated with other data points paints a very precise and specific picture of an individual, including enough to accurately identify them. This is Google's entire business model. Health data is very far from this idealized anonimization-friendly case. It is some of the most specific data avalible about you, and it can easily be abused to disadvantage you in ways you can do nothing about (insurance, job prospects, social standing, even as far as getting your life threatened by people who disagree with things like sexuality and abortion) Im sure Google appreciates your faith in them. But you should carefully consider the consequnces. Once the information is out there, there is no getting it back.
    - jkn 12y ago
      You're making a good point with the "there is no getting back". I kind of trust Google based on their track record but you can never be sure about the future[1]. But all in all what matters is not whether I can trust them perfectly, it's that to me the expected benefits are concrete and vastly outweigh the theoretical risks. I guess I'm in a privileged position such that I wouldn't even mind having most of these data made public to help with this kind of research[2]. To me it is more about progressivism vs. conservatism than about faith in a particular company (though I do worry that one company might concentrate too much power). [1] Although Google's direction is arguably more stable than is usual for publicly traded companies, given the particular share structure designed to keep control in the hands of the founders. [2] Mostly, being in generally good health and living in a country where basic health insurance is guaranteed and good enough, with premiums that don't depend on your health.
tempodox 12y ago
This is BS on several levels. Then again, that a Goog head honcho is not a friend of “Internet privacy” isn't really a surprise. And him misrepresenting the reasons and consequences of that privacy is to be expected. Never let the truth stand in the way of profit or power. As for medical records, no institution hoarding them has any interest in sharing them. Patients are not consulted on this, so their privacy is only a tiny part of the reason. As far as patient privacy goes, “anonymising” them is not so easy either, as another commenter already explained.
belorn 12y ago
The question about medical records is a red herring since the problem is mostly solved already. You treat the records as private, which is only unlocked to other doctors who has a recorded valid reason for accessing it. This is how many journal system operate today at hospitals and police station, and except for the occasional bad monitoring of it, it seems to operate quite well. Researcher should be forced to follow ethical guidelines in order to prevent data mining that try to unearth facts written between the lines, like sexual orientation. Patients should also be asked if the journal can be shared with researchers, in similar fashion as asking patients if they will accept to have an intern in the room. Last, there need to be some liability if journals get leaked. It is very important to create economic incentives for functional security, which experts are paid to regularly verify and test. This has of course nothing to do with keeping large databases about people and selling it as a service or product. Nothing at all about Google business model.

deleted 12y ago

[deleted]

angersock 12y ago

Yeah, 'cause Google and Facebook, with all of their extensive online surveillance and profiling, have done such a bangup job giving me ads I care about. Fuck that. EDIT: Seriously, if the yardstick is "but but but think of all the great things we could do, just like we have with the internet" I'm going to request proof that we've in fact accomplished that tremendous good in terms of advertising and whatnot. If they can't even show that for their main line of business, any claims about medicine seem shaky, no?

jacquesm 12y ago

I agree with Larry, at the same time google is one of the last companies on the planet that I would trust with that data. Much of this internet privacy backlash is aimed specifically at Google and Facebook (and of course the NSA, but let's assume that they don't have any problems getting to your medical data anyway).

jkn 12y ago
Why is that? The data are anonymized. But then even if they weren't anonymized, I think Google would be one of the company I would trust the most for that. They know what they're doing in terms of security and of all the companies that know a lot about me, they're the one who consistently delivered great value from the data they have. I'm thinking of things like search, Google Now and the maps interface for my location history. Plus I'm happy that the monetization of my data serves to fund great projects like this one. It didn't have to be so...
- jacquesm 12y ago
  Anonymizing data is a lot harder than it seems at first glance. So far any large enough dataset that was deemed to be properly anonymized has been used to prove the opposite by identifying individuals. The only way you can properly anonymize such data is by reducing it to aggregates but then most of the utility is lost. Taking the combination of google search data and medical data it would not at all be hard to tie some of the searches (and thus identified users) to medical records. Especially not if the diseases / symptoms are rare.
- throwaway2048 12y ago
  Even anonimized data that seems very generic and nonspecific, when corolated with other data points paints a very precise and specific picture of an individual, including enough to accurately identify them. This is Google's entire business model. Health data is very far from this idealized anonimization-friendly case. It is some of the most specific data avalible about you, and it can easily be abused to disadvantage you in ways you can do nothing about (insurance, job prospects, social standing, even as far as getting your life threatened by people who disagree with things like sexuality and abortion) Im sure Google appreciates your faith in them. But you should carefully consider the consequnces. Once the information is out there, there is no getting it back.
  - jkn 12y ago
    You're making a good point with the "there is no getting back". I kind of trust Google based on their track record but you can never be sure about the future[1]. But all in all what matters is not whether I can trust them perfectly, it's that to me the expected benefits are concrete and vastly outweigh the theoretical risks. I guess I'm in a privileged position such that I wouldn't even mind having most of these data made public to help with this kind of research[2]. To me it is more about progressivism vs. conservatism than about faith in a particular company (though I do worry that one company might concentrate too much power). [1] Although Google's direction is arguably more stable than is usual for publicly traded companies, given the particular share structure designed to keep control in the hands of the founders. [2] Mostly, being in generally good health and living in a country where basic health insurance is guaranteed and good enough, with premiums that don't depend on your health.

tempodox 12y ago

This is BS on several levels. Then again, that a Goog head honcho is not a friend of “Internet privacy” isn't really a surprise. And him misrepresenting the reasons and consequences of that privacy is to be expected. Never let the truth stand in the way of profit or power. As for medical records, no institution hoarding them has any interest in sharing them. Patients are not consulted on this, so their privacy is only a tiny part of the reason. As far as patient privacy goes, “anonymising” them is not so easy either, as another commenter already explained.

belorn 12y ago

The question about medical records is a red herring since the problem is mostly solved already. You treat the records as private, which is only unlocked to other doctors who has a recorded valid reason for accessing it. This is how many journal system operate today at hospitals and police station, and except for the occasional bad monitoring of it, it seems to operate quite well. Researcher should be forced to follow ethical guidelines in order to prevent data mining that try to unearth facts written between the lines, like sexual orientation. Patients should also be asked if the journal can be shared with researchers, in similar fashion as asking patients if they will accept to have an intern in the room. Last, there need to be some liability if journals get leaked. It is very important to create economic incentives for functional security, which experts are paid to regularly verify and test. This has of course nothing to do with keeping large databases about people and selling it as a service or product. Nothing at all about Google business model.