[open-science] Privacy and open research data

Sat Feb 16 18:08:10 UTC 2013

Thanks Steve

I think partially it is not addressed as much as it might be by open
science advocates because privacy is a domain specific issue and the
majority of data from the natural sciences doesn't have this problem (I
think that's a true statement, if you consider
physics+chemistry+maths+non-human bioscience and every other science that
doesn't involve people). Obviously, social sciences and clinical sciences
often will.

There has needed to be a general, high level push for open data in science
which required a simple message and now as the idea becomes more widespread
I think we'll see a lot more consideration of the nuances of publishing
data in the fields where privacy concerns apply. However, I personally feel
we still have a lot more work to do at the broader brush stroke 'scientific
community' level.

We don't ignore the issue. For instance, the working group response to the
Royal Society Science as a Public Enterprise consultation was explicit in
acknowledging that not everything can and should be made open:
http://science.okfn.org/2012/07/10/working-group-response-to-royal-society-science-as-a-public-enterprise/
"We acknowledge that there are reasons why outputs should not be released
but these are restricted to a small set of issues including but not
necessarily limited to personal privacy, personal endangerment, risks to
the research itself, danger to the environment. All of these are much
larger issues which deserve consideration."

Which was reflected in the final report by the Royal Society's use of the
term 'intelligent openness' and their own discussion of privacy issues
http://royalsociety.org/policy/projects/science-public-enterprise/report/

However, perhaps we should be proactively targeting scientific communities
who have this greater barrier to sharing research data, or even better
encouraging more members of those communities themselves to encourage
discussion and explore and build tools to make it possible. Many
researchers are now considering how to be as open as posible without
violating privacy, as in the Privacy Tools for Sharing Research Data
project http://privacytools.seas.harvard.edu/ to which you linked and we
should be following and promoting more of that work.

I don't think the open data/science community is making itself vulnerable
at this stage, but I can see that constantly hammering home a simple and
absolute message about how science should be done could be alienating to
those researchers who have even more problems to overcome in opening up
data, if indeed they can, than those in fields who don't use personal data
(and even then we acknowledge that making this stuff open and reuseable is
not easy by any stretch of the imagination!)

Jenny

On Tue, Feb 12, 2013 at 8:04 PM, Song, Stephen <stephen.song at gmail.com>wrote:

> Thanks Mario,
>
> On 8 February 2013 00:04, Jesús M. Siqueiros <
> jmsiqueiros.bioetica at gmail.com> wrote:
>
>> Dear Steve;
>>
>> Misha Agrist has a paper in Nature on the subject of genetic privacy.
>> Probably you already know Misha Agrist, I believe you might find his work
>> useful and interesting.
>>
>>
>> http://www.nature.com/news/genetic-privacy-needs-a-more-nuanced-approach-1.12363
>>
>
> I thought I would share a couple of other resources that may be of
> interest.
>
> Privacy Tools for Sharing Research Data
> http://privacytools.seas.harvard.edu/
>
> Practices and Tools for Microdata Anonymisation from the International
> Household Survey Network
> http://www.ihsn.org/home/node/118
>
> After reading the likes of Paul Ohm, Latanya Sweeney, Helen Nissenbaum,
> Arvind Narayanan and others, I now find myself struck by just how absent
> the issue of privacy appears to be in the Open Data world.  It's a bit like
> a movement promoting exercise without providing any guidance on how to
> exercise safely.
>
> It does make me wonder whether the Open Data/Science community is not
> putting itself in a vulnerable position by not addressing privacy in the
> context of Open Data advocacy more proactively.
>
> -Steve
>
>
>>
>>
>> Cheers
>>
>> Mario
>>
>>
>> 2013/1/28 Song, Stephen <stephen.song at gmail.com>
>>
>> Hi all,
>>>
>>> I am hoping someone might be able to point me to resources related to
>>> the understanding and management of privacy in the context of an open
>>> science agenda.  Articles such as this recent one in the NYT
>>>
>>>
>>> http://www.nytimes.com/2013/01/18/health/search-of-dna-sequences-reveals-full-identities.html
>>>
>>> highlight the complexity of effectively managing privacy in a big data
>>> world.  Can anyone point me to useful research, resources, guides on this
>>> issue?
>>>
>>> Many thanks in advance... Steve Song
>>>
>>> On 28 January 2013 07:00, Velichka Dimitrova <
>>> velichka.dimitrova at okfn.org> wrote:
>>>
>>>> Dear all,
>>>>
>>>> We have published sessions summary, slides and audio from the First
>>>> Open Economics Workshop, which took place in Cambridge, UK last December
>>>> gathering 40 academic economists, data publishers and funders of economics
>>>> research, researchers and practitioners: *
>>>> http://blog.okfn.org/2013/01/28/first-open-economics-international-workshop-recap/
>>>> *
>>>>
>>>> The Open Knowledge Foundation realised this workshop together with the
>>>> Centre for Intellectual Property and Information Law at Cambridge with the
>>>> support of the Alfred P. Sloan Foundation.
>>>>
>>>> You can also visit the event's webpage<http://openeconomics.net/events/workshop-dec-2012/>and see some
>>>> photos of the event on Flickr<http://www.flickr.com/photos/okfn/sets/72157632461581780/>
>>>> .
>>>>
>>>> --
>>>> Velichka Dimitrova
>>>> Open Economics Project Coordinator
>>>> Open Knowledge Foundation
>>>> http://okfn.org | http://openeconomics.net
>>>>
>>>>
>>>> _______________________________________________
>>>> open-science mailing list
>>>> open-science at lists.okfn.org
>>>> http://lists.okfn.org/mailman/listinfo/open-science
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>>>>
>>>>
>>>
>>>
>>> --
>>> Steve Song
>>> +1 902 529 0046
>>> +27 83 482 2088 (SMS only)
>>> http://manypossibilities.net
>>> http://villagetelco.org
>>>
>>> _______________________________________________
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>>>
>>>
>>
>>
>> --
>> Dr. Jesús M. Siqueiros
>> Investigador
>> Departamento de Estudios Jurídicos, Éticos y Sociales
>> jsiqueiros (at) inmegen . gob . mx
>> Tel. 5350 1900 ext. 1158
>> INMEGEN
>>
>
>
>
> --
> Steve Song
> +1 902 529 0046
> +27 83 482 2088 (SMS only)
> http://manypossibilities.net
> http://villagetelco.org
>
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>
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