[open-science] open-science Digest, Vol 17, Issue 7

Wed Mar 24 13:19:05 UTC 2010

I sent a version of this to Daniel privately, but he noted that perhaps 
it might have gone to the list as well. It ties into Cameron's point 
about avoiding this question entirely in the PP, but also into the 
importance of understanding what "open data" actually means.

Remember that "open" in the sense of the SC protocol, the OKF definition 
and the panton principles is about the *intellectual property* rights 
associated with data - copyrights, database rights - and *contractual 
property* rights associated with data products. Open doesn't mean it's 
free of constraints like privacy, and it also doesn't mean the data are 
actually *useful* - curated, annotated, explained.

Privacy rights are vastly complex and cannot be waived with public 
licenses like intellectual property rights. there is a complex process 
known as "informed consent" that must be achieved before privacy rights 
can be legally waived, and that consent must be vetted through a process 
approved by an institution's IRB (institutional review board). The IRB 
terms govern the movement of data, under application by researchers.

Thus, data can indeed be "open" under the PP but not made available to 
the world, as the PP only touch on the IP aspects of data. Privacy 
rights create a major driver for using the public domain on data 
actually, as the  prevalence of privacy rights on vast swaths of science 
data - be clinical health data or social science research - renders 
those data incompatible with "viral" sharing regimes on data, as many 
viral regimes disallow the addition of content that cannot itself be 
made viral.

When the data is in the PD, it can flow into a clinical or social 
science database, and then be redistributed under the terms that the IRB 
set forward for the original data, as redistribution of data is 
invaluable in these fields, albeit under much tighter restrictions than 
we associate with "open" science.

We're working on standardizing IRB agreements right now at Creative 
Commons, based on our years of experience with the huntingtons, 
parkinsons, alzheimers, and other rare disease communities that deal 
with privacy issues in the clinical space. these are in many ways the 
easy ones, because the diseases involved make informed consent easier to 
get. informed consent for healthy control subjects is going to be the 
harder problem. and in social science the issues may be irresolvable - 
deidentification is so easy these days, and getting easier.

We're also working on standards for publishing data sets in a format 
that is actively "re-useful" and will be publishing a set of 
recommendations tomorrow in conjunction with the PLoS Forum that encode 
the PP as the legal part of a multivariate problem of making online data 
actively reusable.

I would prefer the FAQs not overstate the power of "open" from an IP 
perspective. Data that is online but burdened with privacy, or with poor 
curation and annotation, lacking persistent URIs, and so forth - that 
data meets the principles, but is likely to be of little use to a 
working scientist. We run the risk of overheated expectations if we 
simply say "raw data now" - the reality is far more complex, and we're 
not all Tim BL ):-)

jtw

On 3/23/10 2:35 AM, Cameron Neylon wrote:
> The original idea behind the Panton Principles was that we sidestep this
> issue. The key point being that where there are privacy issues (or other
> issues) you simply do not choose to publish the data. The PP are not, at
> least as far as the bullet points are concerned, to dictate when, how, or if
> data are published.
>
> The PP are intended to be applied after the decision has been taken to
> publish the data. And by "publish" we meant to be extremely general - hence
> the addition I made the other day to the FAQ. I think it is important to be
> clear on this point because the term "publish" often means something very
> different to different people. And for many researchers it explicitly
> doesn't include "make available on the web".
>
> Cheers
>
> Cameron
>
>
> On 23/03/2010 13:26, "daniel.mietchen at googlemail.com"
> <daniel.mietchen at googlemail.com>  wrote:
>
>> Dear Iain,
>
> on the first point, what do you think of the current
>> phrasing
> "Respecting the privacy of research subjects should be an
>> integral
> part of the decision whether to make the data Open."?
>
>
>>
>> With kind regards,
>
> Daniel
>
>
>
>> On Tue, Mar 23, 2010 at 2:16 PM, Iain
>> Hrynaszkiewicz
> <Iain.Hrynaszkiewicz at biomedcentral.com>  wrote:
>> Dear all,
>>
>>
>> Writing from a publisher that is keen to make data available, I'd like
>> to
>> point out two sets of guidance relevant to some matters arising from
>> the
>> pirate pad discussions on the Panton Principles.
>>
>> Firstly, the issue of
>> protecting privacy in human subject research. This
>> is a major barrier to the
>> sharing of clinical information and I wonder
>> if it is being glossed over in
>> the FAQ (13). Some practical guidance on
>> openly sharing clinical data was
>> published in the BMJ earlier this year,
>> for example:
>>
>> http://www.bmj.com/cgi/content/full/340/jan28_1/c181
>>
>> Secondly, applying PP
>> prior to publication. At BioMed Central, for
>> example, we encourage openly
>> sharing data before formal publication [in
>> a peer-reviewed journal] and
>> encourage editors to not preclude open
>> projects from publication.
>>
>> http://www.biomedcentral.com/info/about/duplicatepublication
>> So perhaps PP
>> should be applied more uniformly, without the need to
>> clarify what
>> 'publication' is.
>>
>> Best regards,
>>
>> Iain
>>
>>
>> Iain Hrynaszkiewicz
>>
>> Managing Editor
>> BioMed Central
>> Floor 6, 236 Gray's Inn Road
>> London, WC1X
>> 8HL
>> T: +44 (0)20 3192 2175
>> F: +44 (0)20 3192 2011
>> W:
>> www.biomedcentral.com/
>>
>>
>>
>>
>> -----Original Message-----
>> From:
>> open-science-bounces at lists.okfn.org
>>
>> [mailto:open-science-bounces at lists.okfn.org] On Behalf Of
>>
>> open-science-request at lists.okfn.org
>> Sent: 18 March 2010 12:00
>> To:
>> open-science at lists.okfn.org
>> Subject: open-science Digest, Vol 17, Issue
>> 7
>>
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>>
>> Today's Topics:
>>
>>    1. FAQs for the Panton
>> Principles and Open Data (Peter Murray-Rust)
>>
>>
>>
>> ----------------------------------------------------------------------
>>
>>
>> Message: 1
>> Date: Wed, 17 Mar 2010 16:43:47 +0000
>> From: Peter Murray-Rust
>> <pm286 at cam.ac.uk>
>> Subject: [open-science] FAQs for the Panton Principles and
>> Open Data
>> To: open-science<open-science at lists.okfn.org>
>> Message-ID:
>>
>>     <67fd68331003170943h3ab178d5y64f9086c3af5c597 at mail.gmail.com>
>>
>> Content-Type: text/plain; charset="iso-8859-1"
>>
>> We are talking to a variety
>> of editors and publishers who are keen to
>> make
>> data "open available" and
>> in many cases mandate it as part of the
>> scientific
>> process. It's clear
>> that although PP are (I hope) fairly
>> self-explanatory
>> the implications
>> (licences, buttons, "public domain", community norms,
>> etc.)
>> are unclear
>> and need careful explanation. One way to do this is through
>> FAQs
>> and we
>> (Rufus, Cameron, Jonathan + me) are asking for the help of the
>> OpenScience
>> list to provide useful communal answers. I'll post the FAQs
>> -
>> feel welcome
>> to add to them but not TOO many - and ask you to create
>> answers. There is a
>> pirate pad at:
>>
>> http://piratepad.net/LgLRcGLw35
>>
>> Please use to edit,
>> discuss, hack etc.
>>
>> We will appreciate rapid feedback as we hope to promote
>> this to
>> attendees at
>> the AmerChemicalSoc (ACS) next week.
>>
>>
>>
>> --
>>
>> Peter Murray-Rust
>> Reader in Molecular Informatics
>> Unilever Centre, Dep. Of
>> Chemistry
>> University of Cambridge
>> CB2 1EW, UK
>> +44-1223-763069
>>
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>
> --
>>
> http://www.google.com/profiles/daniel.mietchen
>
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