[open-science] Privacy and open research data

[Heather Morrison]

On 2013-02-20, at 11:33 PM, Daniel Lombraña González wrote:

Hi there,

So I guess the question here is how do we allow to open data sets to have different degrees of privacy. This is quite similar to the Creative Commons licenses where some people do like them because you have different levels of freedom to choose how do you want to share your data and under which conditions. 

Thus, it may be interesting to create a set of open data licenses that will have different levels of privacy accordingly, so the in case of patients they will actually choose how much do they want to share and how, even specifying if the data could be used for commercial benefits as it happens with the Creative Commons licenses, as some people will be fine with that, while other people will be completely against this commercial option.

From my point of view, in regards of personal data, it should be up to the owner of the data to choose actually how his/her personal data are going to be shared and under which terms. Obviously this is not something trivial to do, but hey, we are discussing here about how we could address this problem, right?

Comment:

This raises some interesting possibilities. E-health creates a new kind of "open" for patients - open access to their own lab data, previously available only to physicians. What if people were empowered to decide how their data might be shared further? I can see some interesting citizen science possibilities - do those prescription drugs really work better than alternative medicines? 

Patient data is very different from scholarly articles and even research datasets that can be made publicly available. Some questions to think about:

-	As datasets, not original expressions, patient data per se is considered copyrightable in some countries, but not others. Physician / patient's own notes attached to this data would be copyrightable.
-	As information that is not actually published, but rather private information, does copyright even apply? (It will if the data is made fully open, but what about private and semi-private information)?

The commercial question

One question that I'd like to highlight because patient data is an interesting case study. If patients were asked whether their data could be made available for commercial re-use (as with the Creative Commons licenses), what does commercial re-use mean? Some possibilities that I can think of off the top of my head that would constitute commercial use:

-	selling personal contact information to advertisers
-	selling health data information to insurance companies, companies that provide confidential advice to other companies on hiring practices (so that they can not hire you because of your health problems, or hire you to take out a life insurance policy because they know your odds of surviving for long are low)
-	providing free health data information to health care professional entrepreneurs, e.g. a rehabiltation practitioner who wants to develop tools that will be helpful to the patient

There are many other possibilities for use of information that could be considered commercial. My main point here is that there are commercial activities that a large percentage of the population (or health patients) would likely want to approve in advance, and other possibilities that most people probably don't want. Rather than attempt a blanket "commercial rights allowed", I think that a more nuanced, thoughtful approach to reap the benefits while avoiding at least the biggest and most obvious pitfalls would be advisable.

best,

Dr. Heather Morrison
The Imaginary Journal of Poetic Economics
http://poeticeconomics.blogspot.com