[open-science] Privacy and open research data

Wed Mar 13 07:27:43 UTC 2013

All,

Just a pointer to our new working group on open data and personal data,
where I expect discussions around privacy, anonymisation and more:

http://lists.okfn.org/mailman/listinfo/mydata-open-data

(launch blog post: http://blog.okfn.org/2013/02/22/open-data-my-data/ )

Cheers,

Laura

On 12 March 2013 15:43, Song, Stephen <stephen.song at gmail.com> wrote:

> A couple of interesting recent finds on privacy:
>
> Private traits and attributes are predictable from digital records of
> human behavior
> http://www.pnas.org/content/early/2013/03/06/1218772110.full.pdf
> - an analysis of Facebook "likes" is a reasonably good predictor of
> sexual orientation, race, political orientation, and even "openness".
> You can try it out yourself at http://www.youarewhatyoulike.com/
>
> The Return of Results in Genetic Testing: Who Owes What to Whom, When, and
> Why?
> http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2227667
> - on the obligation to inform versus the the wish to know and the
> complexity that ensues
>
> -Steve
>
> On 25 February 2013 15:25, Song, Stephen <stephen.song at gmail.com> wrote:
> > Hi Francois,
> >
> > It is a fascinating problem.  It is not hard to envisage a future
> > where there is so much data "exhaust" in the digital atmosphere that
> > it is technically impossible to preserve personal privacy in any kind
> > of meaningful way.  Perhaps we are already there.  If so, then we will
> > need mechanisms to help us choose not to look, in the same way we
> > might discreetly look the other way if someone's wardrobe
> > malfunctioned as opposed to re-viewing it millions of times on
> > youtube.  I recently came across a interesting paper entitled "Code,
> > Nudge, or Notice?"
> > (http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2217013) which
> > explores different incentive mechanisms for getting people to do the
> > right thing or in this case not do the wrong thing.  I think there is
> > a lot of scope for creativity in encouraging openness while respecting
> > privacy.
> >
> > -Steve
> >
> > On 22 February 2013 10:23, Francois Grey <francois.grey at cern.ch> wrote:
> >> Hi Steve et al,
> >>
> >> The ethical challenges surrounding genetic and medical data are
> profound.
> >> This NYT article gives some fascinating examples:
> >>
> http://www.nytimes.com/2012/08/26/health/research/with-rise-of-gene-sequencing-ethical-puzzles.html?pagewanted=all
> >>
> >> I'm suspicious of simple data-centric solutions in this space. It is not
> >> simply a question of defining degrees of privacy on data sets, much as
> that
> >> could be useful. It's about who should decide the degree of privacy, and
> >> when. It's about ethics.
> >>
> >> One ethical problem is that "your data" is not just yours. It is shared
> to a
> >> high degree with your genetic family. Decisions you make to share data
> - in
> >> the hope of finding a cure for cancer, say - may infringe family
> members'
> >> privacy in ways that are hard to foresee.
> >>
> >> Another ethical problem is that "informed consent" is never fully
> informed,
> >> because the consequences of releasing data change with time, as our
> >> scientific understanding of genetics and disease improves.
> >>
> >> Doctors and researchers, bound by traditional views of data privacy and
> >> informed consent, may find themselves in profound ethical conundrums.
> The
> >> NYT article illustrates this with several poignant cases.
> >>
> >> The issue here is not that we have to give up on data privacy, but that
> it
> >> in the rapidly changing and deeply interconnected world of medical
> genetics,
> >> traditional ideas of data privacy as individual and static may be
> >> dangerously inadequate.
> >>
> >> This is definitely a topic that should be discussed in an open science
> >> forum. Advances in science and changing attitudes to openness are what
> makes
> >> this such a profound ethical problem. But it needs more than scientists
> and
> >> data experts to tackle it. Philosophers, lawyers and medical
> practitioners
> >> need to have a say, too.
> >>
> >> And the pharma industry also has to be part of the debate. There are
> some
> >> surprisingly forward-thinking trends about open data emerging from big
> >> pharma, driven by the realization that open data can raise all ships.
> See
> >> for example this open innovation blog from Eli Lilly
> >> http://portal.lillycoi.com/
> >>
> >> Francois
> >>
> >> On 2/20/13 9:12 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
> >>
> >>
> >>
> >>
> >> --
> >> Steve Song
> >> +1 902 529 0046
> >> +27 83 482 2088 (SMS only)
> >> http://manypossibilities.net
> >> http://villagetelco.org
> >>
> >> _______________________________________________
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> >> open-science at lists.okfn.org
> >> http://lists.okfn.org/mailman/listinfo/open-science
> >> Unsubscribe: http://lists.okfn.org/mailman/options/open-science
> >>
> >>
> >>
> >>
> >>
> >> --
> >> Steve Song
> >> +1 902 529 0046
> >> +27 83 482 2088 (SMS only)
> >> http://manypossibilities.net
> >> http://villagetelco.org
> >>
> >> _______________________________________________
> >> open-science mailing list
> >> open-science at lists.okfn.org
> >> http://lists.okfn.org/mailman/listinfo/open-science
> >> Unsubscribe: http://lists.okfn.org/mailman/options/open-science
> >>
> >
> >
> >
> > --
> > Steve Song
> > +1 902 529 0046
> > +27 83 482 2088 (SMS only)
> > http://manypossibilities.net
> > http://villagetelco.org
>
>
>
> --
> Steve Song
> +1 902 529 0046
> +27 83 482 2088 (SMS only)
> http://manypossibilities.net
> http://villagetelco.org
>
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-- 

Dr Laura James

Co-Director
Open Knowledge Foundation
http://okfn.org
*Promoting Open Knowledge in a Digital Age*
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