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>> There has to be balance so that medical science can move forward at a reasonable rate. No there doesn't. If I don't want my personal information being provi

>> There has to be balance so that medical science can move forward at a reasonable rate. No there doesn't. If I don't want my personal information being provided to Google by the NHS it shouldn't happen. In a country where private healthcare isn't an option for most, the only option (the NHS) shouldn't be giving personal data to private, foreign companies, in breach of the law. 'It'll make my job easier' is awful reasoning for violating privacy and the law.

jostmey 9y ago
I haven't been able to do my job with respect to this project. There's a distinction between hard and impossible
- k-mcgrady 9y ago
  Fair point. If you were in the UK I would say that means you're trying to do a job that requires you to break the law and it's been decided that it's in the best interests of society that you don't do that job. Obviously as you said you're in the US and it sounds like your situation is very different (you haven't identified a law stopping your work just an ethics board that won't sign off for a reason you don't know).
  - jostmey 9y ago
    But there are laws about protecting patient information such as the HIPAA laws, which make it much harder to do research and to start a business that processes patient information. These laws become a major consideration for any committee that is deciding whether or not to approve access to data/samples
  - philh 9y ago
    > it's been decided that it's in the best interests of society that you don't do that job. Remember that what has been decided, and what is actually the case, are not always the same. That's why people advocate for changing the law. OP thinks the law is too restrictive; saying "well that's what the law is" is not much of a reply.
    - k-mcgrady 9y ago
      Completely agree, I didn't mean to imply 'because it's law it's what people want' but I don't see any movement in the UK that any significant number of people would want there health data being shared with corporations.
lucio 9y ago
It'll make my job of saving lives/advance medical field more easy IS a good reasoning for wanting a more streamlined mechanism to share statistical data.
- k-mcgrady 9y ago
  No it's not. Arming all police officers, internment, and operating a shoot to kill policy would make stopping terrorism and saving lives more easy. We don't do that. Just because a particular right/freedom seems less important than an other doesn't make it so.
  - drusepth 9y ago
    I'm not sure "arming police to better commit violence and take lives" is on the same level as "peacefully enabling our doctors to be better doctors". One directly causes harm to people. The other _potentially_ causes harm, only if that data gets into the wrong hands and/or is misused. I think saving more lives is worth considering the tradeoff and striking a balance somewhere in the middle (e.g. gathering consent, opting in/out, transparently seeing who what data is shared with, etc).
    - k-mcgrady 9y ago
      I'm not sure "enabling reckless doctors and corporations to misuse, lose, and sell my personal data" is on the same level as... My point being that your twisting of my words to the point they are unrecognisable is silly. Some people may look at my policing suggestion as a positive you look at it as a negative. Same thing applies to privacy. You may trust doctors (and corporations) and mistrust the police, others feel the opposite way - or trust neither.
    - kuschku 9y ago
      > "peacefully enabling our doctors to be better doctors". It is not that. It’s "giving all information that exists about your medical history to a corporation that already tracks 70% of all payment processes and 96% of website accesses, and which aims to fully control your life". That’s a 1984 scenario if I’ve ever seen one.
beisner 9y ago
I think I instinctively agree with your argument, although the particulars of this topic have made me wonder a bit about absolute privacy in the human health space. Specifically, we generally consider privacy not to be an absolute right, but to be one moderated by the rights of the public (i.e. if there is reasonable suspicion that you have committed a crime, police are allowed to violate your privacy and conduct searches with a warrant). I wonder at what point this might extend to issues of medical research/public health. We already know that (in the US at least) cases of certain illnesses must be reported to state/federal authorities, which to some degree violates the privacy of the patient. The selection of what sorts of data are shared is somewhat arbitrary; where is the right place to draw the line? If increasing ease of access (and perhaps violating privacy at some level) to millions of health records could bring about the discovery of more-effective predictors for heart disease 10 years faster than without this access, should this trade-off be made? I'm not saying it should, but it makes me wonder where the line should be drawn. I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.
- plafl 9y ago
  I agree mostly with you but I will add that I think that sacrificing privacy for the benefit of the majority is shortsighted in this case. People must be reassured they can talk freely to their doctors (as they do with their lawyers). I think this is way more important for public health than any study that may or may not improve public health.
- k-mcgrady 9y ago
  I agree balancing rights is important. I would argue that the link between more data and curing a disease is too weak to swing the scales. Another major issue is that you'd be violating rights on a major scale. It would be very easy to make a similar argument that, for example, recording everyones communications would stop or significantly reduce crime. I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.
tim333 9y ago
There seems a compromise possible on the "with patient consent" bit. Maybe by default researchers could have some sort of anonymized data and patients can opt out if they want no data sharing or in if they don't mind researchers seeing it all. Personally I don't mind Google or similar seeing my not very interesting data.
- k-mcgrady 9y ago
  With patient consent I don't see why there would be an issue (although patients would need to be well informed - T&C's like we have for websites on health information would be terrible and abused). I'd say it should be opt-in though.
- chopin 9y ago
  Imho there is no such thing as anonymized health care data. If the data is meaningful each dataset contains enough bits of information to de-anoymize the data when combined with other data sets. This makes Google especially dangerous as they have already much or all of the data required for de-anonymization. Patient consent would make the data much less meaningful as it would remove datasets in a non-random way (better educated people might more likely opt-out). So that's no good solution either. I had recently a doctors visit and was asked exactly that. I opted out as I have no control over the data when released.
matz1 9y ago
Sure, if that what you believe you should fight for it just like other people who think that using personal information for advancement of science is ok will fight for it.
AndrewKemendo 9y ago
You also have the right to not get yourself vaccinated, but is that best for society? The reality is, the more data we have on people the more we can help people make better decisions across their lives. If aggregate medical data identifies a way to save lives or help curb waste/reduce C02 emissions etc... then we should be doing that.

jostmey 9y ago

I haven't been able to do my job with respect to this project. There's a distinction between hard and impossible

k-mcgrady 9y ago
Fair point. If you were in the UK I would say that means you're trying to do a job that requires you to break the law and it's been decided that it's in the best interests of society that you don't do that job. Obviously as you said you're in the US and it sounds like your situation is very different (you haven't identified a law stopping your work just an ethics board that won't sign off for a reason you don't know).
- jostmey 9y ago
  But there are laws about protecting patient information such as the HIPAA laws, which make it much harder to do research and to start a business that processes patient information. These laws become a major consideration for any committee that is deciding whether or not to approve access to data/samples
- philh 9y ago
  > it's been decided that it's in the best interests of society that you don't do that job. Remember that what has been decided, and what is actually the case, are not always the same. That's why people advocate for changing the law. OP thinks the law is too restrictive; saying "well that's what the law is" is not much of a reply.
  - k-mcgrady 9y ago
    Completely agree, I didn't mean to imply 'because it's law it's what people want' but I don't see any movement in the UK that any significant number of people would want there health data being shared with corporations.

lucio 9y ago

It'll make my job of saving lives/advance medical field more easy IS a good reasoning for wanting a more streamlined mechanism to share statistical data.

k-mcgrady 9y ago
No it's not. Arming all police officers, internment, and operating a shoot to kill policy would make stopping terrorism and saving lives more easy. We don't do that. Just because a particular right/freedom seems less important than an other doesn't make it so.
- drusepth 9y ago
  I'm not sure "arming police to better commit violence and take lives" is on the same level as "peacefully enabling our doctors to be better doctors". One directly causes harm to people. The other _potentially_ causes harm, only if that data gets into the wrong hands and/or is misused. I think saving more lives is worth considering the tradeoff and striking a balance somewhere in the middle (e.g. gathering consent, opting in/out, transparently seeing who what data is shared with, etc).
  - k-mcgrady 9y ago
    I'm not sure "enabling reckless doctors and corporations to misuse, lose, and sell my personal data" is on the same level as... My point being that your twisting of my words to the point they are unrecognisable is silly. Some people may look at my policing suggestion as a positive you look at it as a negative. Same thing applies to privacy. You may trust doctors (and corporations) and mistrust the police, others feel the opposite way - or trust neither.
  - kuschku 9y ago
    > "peacefully enabling our doctors to be better doctors". It is not that. It’s "giving all information that exists about your medical history to a corporation that already tracks 70% of all payment processes and 96% of website accesses, and which aims to fully control your life". That’s a 1984 scenario if I’ve ever seen one.

beisner 9y ago

I think I instinctively agree with your argument, although the particulars of this topic have made me wonder a bit about absolute privacy in the human health space. Specifically, we generally consider privacy not to be an absolute right, but to be one moderated by the rights of the public (i.e. if there is reasonable suspicion that you have committed a crime, police are allowed to violate your privacy and conduct searches with a warrant). I wonder at what point this might extend to issues of medical research/public health. We already know that (in the US at least) cases of certain illnesses must be reported to state/federal authorities, which to some degree violates the privacy of the patient. The selection of what sorts of data are shared is somewhat arbitrary; where is the right place to draw the line? If increasing ease of access (and perhaps violating privacy at some level) to millions of health records could bring about the discovery of more-effective predictors for heart disease 10 years faster than without this access, should this trade-off be made? I'm not saying it should, but it makes me wonder where the line should be drawn. I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.

plafl 9y ago
I agree mostly with you but I will add that I think that sacrificing privacy for the benefit of the majority is shortsighted in this case. People must be reassured they can talk freely to their doctors (as they do with their lawyers). I think this is way more important for public health than any study that may or may not improve public health.
k-mcgrady 9y ago
I agree balancing rights is important. I would argue that the link between more data and curing a disease is too weak to swing the scales. Another major issue is that you'd be violating rights on a major scale. It would be very easy to make a similar argument that, for example, recording everyones communications would stop or significantly reduce crime. I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.

tim333 9y ago

There seems a compromise possible on the "with patient consent" bit. Maybe by default researchers could have some sort of anonymized data and patients can opt out if they want no data sharing or in if they don't mind researchers seeing it all. Personally I don't mind Google or similar seeing my not very interesting data.

k-mcgrady 9y ago
With patient consent I don't see why there would be an issue (although patients would need to be well informed - T&C's like we have for websites on health information would be terrible and abused). I'd say it should be opt-in though.
chopin 9y ago
Imho there is no such thing as anonymized health care data. If the data is meaningful each dataset contains enough bits of information to de-anoymize the data when combined with other data sets. This makes Google especially dangerous as they have already much or all of the data required for de-anonymization. Patient consent would make the data much less meaningful as it would remove datasets in a non-random way (better educated people might more likely opt-out). So that's no good solution either. I had recently a doctors visit and was asked exactly that. I opted out as I have no control over the data when released.

matz1 9y ago

Sure, if that what you believe you should fight for it just like other people who think that using personal information for advancement of science is ok will fight for it.

AndrewKemendo 9y ago

You also have the right to not get yourself vaccinated, but is that best for society? The reality is, the more data we have on people the more we can help people make better decisions across their lives. If aggregate medical data identifies a way to save lives or help curb waste/reduce C02 emissions etc... then we should be doing that.