[open-science] Privacy and open research data

[Francois Grey]

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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