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RESEARCH-DATAMAN  January 2019

RESEARCH-DATAMAN January 2019

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Subject:

Re: No consent sought to archive/publish data

From:

Sebastian Karcher <[log in to unmask]>

Reply-To:

Research Data Management discussion list <[log in to unmask]>

Date:

Fri, 4 Jan 2019 15:18:26 +0000

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Hi, 
 
We have been in this situation a number of times and we always look at the details of the consent used. As Robert says, if they contain specific promises not to share the data ("all data will be destroyed", "only myself and my team will have access to the data", etc.) as they typically do, we believe it is unethical to share the data even if it may(!) be technically legal* and we will not publish them in any form. I'm not actually sure what purpose a metadata entry in a repository will serve in that case, so we wouldn't create that either. We have offered to communicate this to journals with strict data availability policies (e.g. PLOS One) but authors have never taken us up on this -- at least for qualitative data, PLOS was willing to publish with a note to that extent based on information provided by the authors.  
 
Where consent does not include an indication on what will happen with data after study completion one way or the other (and, obviously, where the author has no concerns with publishing), we will agree to publish sufficiently de-identified data. 
 
Best, 
Sebastian 
 
* Robert mentions the UK case; in the US this is a bit of a grey area, but I've heard IRB reps say that fully anonymized data aren't human subject data and thus not under Common Rule governance. I'm not sure how widely that position is shared. 
 
 
Sebastian Karcher, Ph.D. | Associate Director 
Qualitative Data Repository 
Moynihan Institute | Maxwell School 
346H Eggers Hall 
Syracuse, New York 13244 
p 315.443.1634  e [log in to unmask] 
SYRACUSE UNIVERSITY 
syr.edu | qdr.syr.edu 
 
 
 
-----Original Message----- 
From: Research Data Management discussion list <[log in to unmask]> On Behalf Of Catharine Bailey 
Sent: Friday, January 4, 2019 8:11 AM 
To: [log in to unmask] 
Subject: No consent sought to archive/publish data 
 
A very happy new year to you all! 
 
I would be keen to find out what your position would be on archiving/publishing anonymised data which underpins analysis in a 2018 publication but that was collected back in 201,2 at a time when consent to archive/publish was not routinely sought. 
 
Would anyone consider using controlled access in this situation? Or would you simply create a metadata record explaining that consent was not sought to publish and therefore it can not be shared.  
 
I'd just been keen to hear what others are doing. 
 
Many thanks, 
 
Catharine Bailey 
Research Data Manager 
Brunel University London 
 
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