[open-science] Privacy and open research data

Tue Mar 12 15:43:17 UTC 2013

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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>>
>>
>>
>>
>> --
>> 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

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