Hi all,
Yes agree with some of what has been said but I think, Sebastian, 'unethical' is often an overused and undefined word. If we look at these kinds of wording as they now relate to the GDPR, then truly deidentified research data doesnt need explicit consent to share it, just to collect it. It's only the personal data we need to worry about as a publishing house.
We have regularly made data available from the past 50 years without consent (especially pre 1990s). The more recent idea of a 'reasonable expectations' test (examining participants original reason for participating in the research) under the 'research for public good' remit, seems to be a highly valuable approach. As long as the Duty of Confidentiality is not broken, all should be OK. Where there may be some risk of disclosure anticipated, appropriate safeguards need to be put in place, e.g. controlling access.
RECs regularly baulk at this though and err on the side of saying no, being more risk averse. I am sure we will see more tests and actual case studies emerging.
Best
L
-----Original Message-----
From: Research Data Management discussion list <[log in to unmask]> On Behalf Of Sebastian Karcher
Sent: 04 January 2019 15:18
To: [log in to unmask]
Subject: Re: No consent sought to archive/publish data
Importance: High
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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