[open-science] Privacy and open research data

[Song, Stephen]

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
>>
>>
>>
>>--
>>Steve Song
>>+1 902 529 0046
>>+27 83 482 2088 (SMS only)
>>http://manypossibilities.net
>>http://villagetelco.org
>>
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-- 
Steve Song
+1 902 529 0046
+27 83 482 2088 (SMS only)
http://manypossibilities.net
http://villagetelco.org