5 ms·

I think this situation nicely juxtaposes positive externality with private rights. As an individual, you may wish to hoard all of your personal medical informa

I think this situation nicely juxtaposes positive externality with private rights. As an individual, you may wish to hoard all of your personal medical information. Doing so may provide marginal benefit or protection against some theoretical harms. However, much of medical science relies on large population studies. Is knee surgery worth it? Are breast exams? Do COX-2 inhibitors increase heart attacks? Enormous amounts of good could be done by having large datasets of entire patient histories available for analysis by all, assuming they could not be de-anonymized (if not, then the datasets have to be analyzed under contracts) Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so, and it is my hope that the data was used to publish scientific papers that added to net knowledge of humanity. However, I have to wonder if asking me for permission actually interferes with random sampling. Are people who give permission vs people who refuse statistically more likely to have other behaviors that may influence the results?

rtkwe 11y ago
> assuming they could not be de-anonymized That's where the problem is anonymizing data is really difficult and it takes only a few bits of info to associate that data with a name. It takes only 3 pieces of information to uniquely identify 87% of people, Zip code, birthday, and sex. http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live... http://dataprivacylab.org/projects/identifiability/paper1.pdf http://dataprivacylab.org/projects/identifiability/paper1.pd...
- cromwellian 11y ago
  Right, which justifies the government signing closed source deals to analyze this data, with the threat of legal action for violations. They can stipulate that the results of such analysis should be made public.
- Houshalter 11y ago
  On the other hand anonymization destroys useful data (along with already poor record systems.) There was a Kaggle competition with medical data that had been so thoroughly damaged that 5 year old boys were listed as pregnant.
njs12345 11y ago
It's difficult - I have more of a fairness problem with this (such a deal would probably not be available to researchers or smaller companies) than a data privacy concern. As others point out downstream, I think it's not really in Google's interests to use the data maliciously and I have more faith in their opsec than that of any NHS trust.
cronjobber 11y ago
Nice try. If this was about positive externalities, Google tech could have found its way into the NHS. Instead, as always and every time, data found a way into Google. Funny how that works.
Silhouette 11y ago
Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so And that's your choice. Unfortunately, someone else committed suicide because they didn't ask for the help they needed for their mental health issues because of justified concern that their condition would leak and it would lead to discrimination. There are many reasons privacy is important. Among the most important is the ability to have completely open discussions with clinical professionals about any medical issues you have, without having to worry that anyone has any ulterior motives or that anything you say could come back to haunt you later. It is difficult enough for some people to talk about some conditions even with their own doctor in the privacy of the doctor's office. Probably some valuable benefits would result if we dropped privacy altogether and allowed widespread analysis of clinical data. However, it is an absolute certainty that serious damage is done both when patient confidentiality is perceived to be threatened (through patients not raising issues in the first place) and when patient confidentiality is in fact compromised (through discrimination of various kinds, much of which may be based on misconceptions).
AlexandrB 11y ago
> Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so, and it is my hope that the data was used to publish scientific papers that added to net knowledge of humanity. I've grown cynical. My first thought on seeing this kind of form is that a third party will be making money from the information I provide somehow - whether it's through patented drugs or treatments or through pay journals like those owned by Elsevier. Neither I, nor anyone I know, will get to benefit from from the information I provide without spending money (often exorbitant amounts of it). This is the flip side of privatizing everything. Why should I lift a finger to help for-profit entities when they will not do the same to help me?
- pavel_lishin 11y ago
  > Why should I lift a finger to help for-profit entities when they will not do the same to help me? But if releasing your data leads to research that can save lives, isn't that worth doing even if someone gets rich in the process? I'd much rather there exist a million-dollar treatment that can save my life at the cost of living in debt for the next twenty years, rather than die in six months because the research was never done. (Yes, this is a false dichotomy - there should be a better way of administering treatments and doing medical research.)
- savanaly 11y ago
  It's going to sound like I'm telling you how to live your life and how to feel and I really don't mean it that way but I don't know any other way to express my viewpoint so I'll just power through it: The idea that someone, somewhere is making a profit on something you provided should make you happy, not sad. To make a profit, they had to be paid, and to be paid they normally have to have provided something that someone wanted enough to part with cash. That cash changed hands is not the main point of the transaction (it's a net zero for society, someone gained cash and someone lost it), the main point is rather that something of value was created. You threw out the example of pay journals like Elsevier. It is true that for cases like that, there may be a market inefficiency that means not much value is created. But I think those are edge cases and relatively rare. Even if our worst fears about Elsevier and other rent seeking journals are true, it would still be the case that you're helping rather than hurting by providing anonymized personal data.
aub3bhat 11y ago
You are correct there are already laws and systems in place. E.g. here is an interesting paper in New England Journal of Medicine using California data. Note: Not published by me but someone who I work with. http://www.nejm.org/doi/full/10.1056/NEJMoa1311485 http://www.nejm.org/doi/full/10.1056/NEJMoa1311485
adamsea 11y ago
It's an interesting question for sure. There are issues of consent which, especially for poor or marginalized people, should be addressed. Like Henrietta Lacks... I think in this case and others like it the family, at minimum, has a right to know. "...it was not until 1973, when a scientist called to ask for blood samples to study the genes her children had inherited from her, that Ms. Lacks’s family learned that their mother’s cells were, in effect, scattered across the planet. Some members of the family tried to find more information. Some wanted a portion of the profits that companies were earning from research on HeLa cells. They were largely ignored for years." http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html http://www.nytimes.com/2013/08/08/science/after-decades-of-r...

rtkwe 11y ago

> assuming they could not be de-anonymized That's where the problem is anonymizing data is really difficult and it takes only a few bits of info to associate that data with a name. It takes only 3 pieces of information to uniquely identify 87% of people, Zip code, birthday, and sex. http://arstechnica.com/tech-policy/2009/09/your-secrets-live-online-in-databases-of-ruin/ http://arstechnica.com/tech-policy/2009/09/your-secrets-live... http://dataprivacylab.org/projects/identifiability/paper1.pdf http://dataprivacylab.org/projects/identifiability/paper1.pd...

cromwellian 11y ago
Right, which justifies the government signing closed source deals to analyze this data, with the threat of legal action for violations. They can stipulate that the results of such analysis should be made public.
Houshalter 11y ago
On the other hand anonymization destroys useful data (along with already poor record systems.) There was a Kaggle competition with medical data that had been so thoroughly damaged that 5 year old boys were listed as pregnant.

njs12345 11y ago

It's difficult - I have more of a fairness problem with this (such a deal would probably not be available to researchers or smaller companies) than a data privacy concern. As others point out downstream, I think it's not really in Google's interests to use the data maliciously and I have more faith in their opsec than that of any NHS trust.

cronjobber 11y ago

Nice try. If this was about positive externalities, Google tech could have found its way into the NHS. Instead, as always and every time, data found a way into Google. Funny how that works.

Silhouette 11y ago

Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so And that's your choice. Unfortunately, someone else committed suicide because they didn't ask for the help they needed for their mental health issues because of justified concern that their condition would leak and it would lead to discrimination. There are many reasons privacy is important. Among the most important is the ability to have completely open discussions with clinical professionals about any medical issues you have, without having to worry that anyone has any ulterior motives or that anything you say could come back to haunt you later. It is difficult enough for some people to talk about some conditions even with their own doctor in the privacy of the doctor's office. Probably some valuable benefits would result if we dropped privacy altogether and allowed widespread analysis of clinical data. However, it is an absolute certainty that serious damage is done both when patient confidentiality is perceived to be threatened (through patients not raising issues in the first place) and when patient confidentiality is in fact compromised (through discrimination of various kinds, much of which may be based on misconceptions).

AlexandrB 11y ago

> Whenever I visit the doctor and I am given a form asking if my data can be sent to some group to participate in a study, I always answer yes. Never once have I had any negative repercussions from doing so, and it is my hope that the data was used to publish scientific papers that added to net knowledge of humanity. I've grown cynical. My first thought on seeing this kind of form is that a third party will be making money from the information I provide somehow - whether it's through patented drugs or treatments or through pay journals like those owned by Elsevier. Neither I, nor anyone I know, will get to benefit from from the information I provide without spending money (often exorbitant amounts of it). This is the flip side of privatizing everything. Why should I lift a finger to help for-profit entities when they will not do the same to help me?

pavel_lishin 11y ago
> Why should I lift a finger to help for-profit entities when they will not do the same to help me? But if releasing your data leads to research that can save lives, isn't that worth doing even if someone gets rich in the process? I'd much rather there exist a million-dollar treatment that can save my life at the cost of living in debt for the next twenty years, rather than die in six months because the research was never done. (Yes, this is a false dichotomy - there should be a better way of administering treatments and doing medical research.)
savanaly 11y ago
It's going to sound like I'm telling you how to live your life and how to feel and I really don't mean it that way but I don't know any other way to express my viewpoint so I'll just power through it: The idea that someone, somewhere is making a profit on something you provided should make you happy, not sad. To make a profit, they had to be paid, and to be paid they normally have to have provided something that someone wanted enough to part with cash. That cash changed hands is not the main point of the transaction (it's a net zero for society, someone gained cash and someone lost it), the main point is rather that something of value was created. You threw out the example of pay journals like Elsevier. It is true that for cases like that, there may be a market inefficiency that means not much value is created. But I think those are edge cases and relatively rare. Even if our worst fears about Elsevier and other rent seeking journals are true, it would still be the case that you're helping rather than hurting by providing anonymized personal data.

aub3bhat 11y ago

You are correct there are already laws and systems in place. E.g. here is an interesting paper in New England Journal of Medicine using California data. Note: Not published by me but someone who I work with. http://www.nejm.org/doi/full/10.1056/NEJMoa1311485 http://www.nejm.org/doi/full/10.1056/NEJMoa1311485

adamsea 11y ago

It's an interesting question for sure. There are issues of consent which, especially for poor or marginalized people, should be addressed. Like Henrietta Lacks... I think in this case and others like it the family, at minimum, has a right to know. "...it was not until 1973, when a scientist called to ask for blood samples to study the genes her children had inherited from her, that Ms. Lacks’s family learned that their mother’s cells were, in effect, scattered across the planet. Some members of the family tried to find more information. Some wanted a portion of the profits that companies were earning from research on HeLa cells. They were largely ignored for years." http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html http://www.nytimes.com/2013/08/08/science/after-decades-of-r...