[open-science] Privacy and open research data

[Puneet Kishor]

Well, open science list is a perfectly good place to have this discussion, Steve. I am learning a lot from just watching this thread and reading and soaking in all the links. Please continue this very important topic.

On Feb 20, 2013, at 6:12 PM, "Song, Stephen" <stephen.song at gmail.com> wrote:

> Hi Francois,
> 
> Everyone wants privacy in some degree or another, in some context or
> another.  Privacy is about control and expectation.  Informed consent,
> which I think is a great idea, is a practical application of control
> and expectation.  We would like to know what is known about us and
> what the implications are of that knowledge.
> 
> Some might argue that privacy is dead and we should just get over it
> but I think that would be a pity and might actually be detrimental to
> freedom of speech.  If everything is public and observed, might we not
> be less inclined to speak up?  Certainly some Open Government research
> has pointed to this.
> 
> I think there is an opportunity to think creatively about Open Data
> and Privacy although perhaps the Open Science list is not quite the
> right place.  Where is the right place to have that discussion?
> 
> Cheers... Steve
> 
> 
> 
> 
> On 20 February 2013 12:34, Francois Grey <francois.grey at cern.ch> wrote:
>> Steve,
>> 
>> I'm going to wade in here with a related question. Who wants privacy, and
>> why?
>> 
>> The reason I raise this is because of interactions I've had over the last
>> year with Stephen Friend (Sage Bionetworks) and the cancer communities his
>> organization deals with. These provide examples of individuals -
>> potentially very vulnerable people due to their genetic illnesses - who
>> actually want to share more personal medical data openly, for example
>> related to drug testing, because they believe that can accelerate
>> research. This is in contrast to corporations, which are reluctant to
>> share such data, because of its perceived value. The 'portable legal
>> consent' pioneered by Sage is a novel response to this conundrum.
>> 
>> I realize that this trend raises many profound questions: sharing your own
>> genetic and medical data means you are also sharing quite a lot of
>> information about your family. So do you need their consent, too? But it's
>> a trend that challenges perceptions of who is interested in preserving
>> data privacy, and why. Who's really afraid of Virginia Woolf?
>> 
>> 
>> Thoughts?
>> 
>> Francois
>> 
>> On 2/20/13 9:21 AM, "Song, Stephen" <stephen.song at gmail.com> wrote:
>> 
>>> On 19 February 2013 23:59, Peter Murray-Rust <pm286 at cam.ac.uk> wrote:
>>>> I am grateful for the Ohm paper and I admit that I have possibly taken
>>>> too
>>>> simplistic approach. I would be able to be convinced taht some human,
>>>> species and perhaps geodata may have to be hidden as it cannot be
>>>> anonymised..  However there are tens of billions of dollars or more
>>>> public
>>>> data thrown away every year in physical sciences (chemistry, materials)
>>>> and
>>>> the risk in making most of these public must be very small. It will be
>>>> important to draw some borderlines
>>> 
>>> I agree wholeheartedly.  Thus an open question for me is:  Should the
>>> Open Data/Science movement consider a more pro-active approach in
>>> defining some of those borderlines and good practice rather than
>>> having to deconstruct a policy defined through a knee-jerk reaction to
>>> a big privacy compromise or through slightly more nefarious agendas
>>> such as the Canadian example that Heather gave?
>>> 
>>> -Steve
>>> 
>>> 
>>>> 
>>>> P.
>>>> 
>>>> 
>>>> --
>>>> Peter Murray-Rust
>>>> Reader in Molecular Informatics
>>>> Unilever Centre, Dep. Of Chemistry
>>>> University of Cambridge
>>>> CB2 1EW, UK
>>>> +44-1223-763069
>>> 





--
Puneet Kishor
Policy Coordinator for Science and Data
Creative Commons