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

Wed Mar 24 14:46:25 UTC 2010

Dear John, and Tom,

I was excited to read your discussions of data standards and look forward to the PLoS article (tomorrow?).

BMC Research Notes (http://www.biomedcentral.com/bmcresnotes/) is also very interested in this area and is trying to encourage data-driven publications, data harvesting and re-use; a corollary to which is guidance and best practice for sharing in different science disciplines.

Best wishes,

Iain

PS. I absolutely agree consent for sharing from human subjects, as part of study recruitment, is key to overcoming privacy barriers.

From: Tom Moritz [mailto:tom.moritz at gmail.com] 
Sent: 24 March 2010 14:36
To: John Wilbanks
Cc: Cameron Neylon; Iain Hrynaszkiewicz; open-science at lists.okfn.org
Subject: Re: [open-science] open-science Digest, Vol 17, Issue 7

John's comments are important and point up a fundamental issue respecting making disclosed 
data effective / useful.  Data placed on an electronic billboard next to the Santa Monica Freeway
are openly available but are virtually useless except by a series of cumbersome machinations...

At a time when government agencies in the US are being pushed to disclose data it is essential
that we develop guidelines and standards for making disclosed data directly useful -- not just "informative"...

The IPCC situation ("Climate-gate") has made all the more clear why the precise lineages and provenance of data 
-- the record of scientific work flow, transformations, combinations and recombinations -- must be readily available for
review and assessment...

Tom

Tom Moritz
1968 1/2 South Shenandoah Street, 
Los Angeles, California 90034 
USA
+1 310 963 0199 (cell)
tommoritz (Skype)
http://www.linkedin.com/in/tmoritz 

“Πάντα ῥεῖ καὶ οὐδὲν μένει” (Everything flows, nothing stands still.) --Heraclitus                             

Please consider the environment before printing this email.

On Wed, Mar 24, 2010 at 6:19 AM, John Wilbanks <wilbanks at creativecommons.org> wrote:

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/

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Subject: open-science Digest, Vol 17, Issue
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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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