[open-science] Privacy and open research data

Fri Feb 22 14:23:42 UTC 2013

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<mailto: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<mailto: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<mailto:stephen.song at gmail.com>> wrote:

On 19 February 2013 23:59, Peter Murray-Rust <pm286 at cam.ac.uk<mailto: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

_______________________________________________
open-science mailing list
open-science at lists.okfn.org<mailto: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<mailto:open-science at lists.okfn.org>
http://lists.okfn.org/mailman/listinfo/open-science
Unsubscribe: http://lists.okfn.org/mailman/options/open-science

-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://lists.okfn.org/pipermail/open-science/attachments/20130222/5ea592e9/attachment-0001.html>