[open-science] Privacy and open research data

Fri Feb 22 16:06:00 UTC 2013

Hi All

While I'd strongly encourage the continuation of this thread (which is
fascinating), I'd just like to draw people's attention to a new working
group being formed at OKF on 'Open Data and MyData', to allow those from
all domains with an interest in digging deeper into some these issues to
discuss and act.

There's a subscription link in this blog post from Laura James
http://blog.okfn.org/2013/02/22/open-data-my-data/

Jenny

On Fri, Feb 22, 2013 at 2:23 PM, 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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