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...
http://dataprivacylab.org/projects/identifiability/paper1.pd...
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).
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-r...
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?
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.
This seems like a double standard. Why should I be happy when corporations will regularly go to court to make sure that nothing they create returns to the public domain within my lifetime? The norm seems to be capturing this kind value wherever (and for a long as) possible, not distributing it freely for the good of mankind.
I'm not making a normative argument that this is a healthy way to live or for society to operate. In a functional community resources, ideas, and capabilities may be shared freely for the benefit of all, but it can't always go one way. That's exploitation, not community.
I'd rather hideously expensive treatments exist, even if I can't afford them, than live in a world where they're never even an option. Price can and does change over time, and those treatments become more accessible to more people. But if the treatments are never developed in the first place, then that's an even greater tragedy because then there's literally nothing that can be done to make them accessible.
You might have sold your own data for a higher price if you had known.
Especially when that private entity gains more power through my data and tries everything from questionable business practices to lobbying to make sure they, and only they, reap the benefits.
People value chemical weapons and forced labor as well. They're willing to pay a lot for them, too.
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.)
You aren't giving up something of value to you. There's zero opportunity cost involved. The value is added after your data is collected, collated, analyzed, and used by researchers. Individually, it's meaningless. Together, it's priceless.
Will someone eventually profit? Sure, but they'll do so because society benefits from the work they've done. And eventually, the cost will decrease. Would you rather have drug treatments that exist in the first place even if someone profits from them or nothing? Those are pretty much your options. For all of its flaws, the current research model at least works. The only other option, besides doing nothing and letting people die from diseases we could eventually treat, is some sort of public financing and that comes with a host of problems. Would anyone really be so foolish as to want to subject medical research to the congressional budget process, even if there's an abstraction layer between congress and the researchers? That means tradeoffs, and lots of them: for instance, Drug option A would be pursued, and option B ignored because we're already funding A even if B might be more promising later on.
We already see it with federal applied research when critical work is jeopardized for the sake of political grandstanding. Every so often, someone will trot out a cherry-picked grant they don't like and wave it around like a red flag in front of a bull. Drug companies might be bad enough, but the politicians would be worse.
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.
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?