 |
 |
Hi, I wanted to add a bit of clarification on this point. What is expected is that researchers will ask participants if they consent to share data, as part of the larger consent conversation regarding research participation and output dissemination. The final decision to share data (or not) rests with participants. Researchers should provide information about sharing as part of the info sheet and consent conversation - discussing both benefits and risks of sharing. There are some suggestions here to help researchers prepare for this conversation with participants. http://ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/inform-participants.aspx Several of us here at the UK Data Service are available to discuss individual cases and provide support and more details if we can. Best, Libby Bishop UK Data Service From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Schwamm, Hardy Sent: 27 March 2015 10:05 To: [log in to unmask] Subject: Re: RDM Practice and Ethics approval? Hi Kate, The same at Lancaster. We are going to discuss consent forms and the implications on data sharing in the coming weeks. We'd be interested in the preparation work you are able to share, too. The Implementation notes<http://www.esrc.ac.uk/_images/research-data-policy_tcm8-34123.pdf> to the new ESRC Data Policy mention that "when gaining informed consent, include consent for data sharing" which will be new (and possibly unwelcome) for some of our researchers. Hardy Hardy Schwamm Research Data & Repository Manager The Library | Lancaster University | LA1 4QF | UK [log in to unmask]<mailto:[log in to unmask]> From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Brenda Phillips Sent: 27 March 2015 09:35 To: [log in to unmask]<mailto:[log in to unmask]> Subject: Re: RDM Practice and Ethics approval? Hello Kate I can confirm that at Leeds we would be particularly interested and welcome any preparation work you have in this area that can be shared with us. My email details are as below. Kindest regards Brenda Phillips Research Data Management (RDM) Advisor Research Data Leeds University of Leeds 0113 343 1769 email: [log in to unmask]<mailto:[log in to unmask]> http://researchdata.leeds.ac.uk/ ________________________________ From: Research Data Management discussion list <[log in to unmask]<mailto:[log in to unmask]>> on behalf of Katherine McNeill <[log in to unmask]<mailto:[log in to unmask]>> Sent: 26 March 2015 15:53:20 To: [log in to unmask]<mailto:[log in to unmask]> Subject: Re: RDM Practice and Ethics approval? Mary (and others), We have been going through just what you described here (meeting w/other stakeholder RDM-related service groups on campus) and just had our initial meeting with our ethics board last week. I don't have any other big issues to mention that haven't been highlighted (the conversation often circled back to consent forms, and the UKDA and others mentioned are a great source for standard language on this), but we did talk in general how we could collaborate/communicate more between our services, especially in the area of educating researchers (to anticipate downstream data sharing). I did a fair amount of prep work on the issue for that particular department and would be happy to share that with you (my own prep sheet, a handout we produced for them, etc.) if that would help in your preparation. Sincerely, Kate ___________________________________ Katherine McNeill<http://libguides.mit.edu/profiles/mcneillh> Research Data and Economics Librarian Massachusetts Institute of Technology [log in to unmask]<mailto:[log in to unmask]> | 617-253-0787 From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Bishop, Libby Sent: Monday, March 23, 2015 5:37 PM To: [log in to unmask]<mailto:[log in to unmask]> Subject: Re: RDM Practice and Ethics approval? Hi Andy and all, Thanks for highlighting the UK Data Service info and links. As others have described at various universities, we don't have a fully joined up system, but nonetheless, there is substantial coordination and collaboration to support RDM across our Research Enterprise Office, the Uni REC, and the UK Data Service. Some examples: The REO run their own events to support researchers writing DM plans. We participate in some of them on various topics, such as the costing of DM planning. I work at the UK Data Service in RDM (and other areas) and also sit on the Uni REC. I am able to ensure that proposals that get to the REC are attentive to DM issues. That said, others from the Research office also sit on the REC, and I have been impressed that they are very well informed on DM issues, and seem to be doing a great job of making researchers aware of such issues as they prepare DM plans. The latest version of the ESRC's Framework for Research Ethics now explicitly recognises that ethical issues need to be addressed throughout the entire data life cycle, including areas of impact, dissemination and data sharing. [Disclosure - I am a member of the FRE review panel.] There is also strong agreement that the collection and dissemination of case studies, templates, consent forms and info sheets would be a excellent idea. There are logistical and other challenges, but there should be progress on that front shortly. Libby ___________________________________ Libby Bishop Manager, Producer Relations - Research Ethics ___________________________________ T +44(0) 1206 872664 E [log in to unmask]<mailto:[log in to unmask]> W ukdataservice.ac.uk ___________________________________ UK Data Service UK Data Archive University of Essex Wivenhoe Park, Colchester CO43SQ __________________________ New book: Corti, L., Van den Eynden, V., Bishop, L and Woollard, M. Managing and Sharing Research Data: A Guide to Good Practice Available at Sage http://www.uk.sagepub.com/books/Book240297 ________________________________ From: Research Data Management discussion list <[log in to unmask]<mailto:[log in to unmask]>> on behalf of Andy Turner <[log in to unmask]<mailto:[log in to unmask]>> Sent: Monday, March 23, 2015 4:06 PM To: [log in to unmask]<mailto:[log in to unmask]> Subject: Re: RDM Practice and Ethics approval? Nice one Stephen. Hi Mary, list, I pushed an idea about developing something along these lines in the early stages of the Jisc Research Data Spring (http://researchatrisk.ideascale.com/a/dtd/Ethics-and-RDM/102168-31525). Although it attracted some votes, it got no further than gaining a little popularity. The idea to develop guidance was taken forward though and formed part of the Managing Sensitive Research Data Project Work Plan (https://docs.google.com/document/d/1juRGZwksZXFuhOS6ge72YMcqNGxW1dF8uBaKNv0T38s/edit). That is also stalled at present though. Louise Corti emailed the list about a week ago pointing to ESRC work in this field, which is well funded and reasonably extensive. Following up on that, here are some links from where there are some examples of consent forms and participant information sheet examples linked: http://ukdataservice.ac.uk/manage-data/ http://www.data-archive.ac.uk/create-manage/consent-ethics The Research Data Management Service team at the University of Leeds are collecting together all sorts of documentation that may be looked at as examples. These include data sharing agreements between research stakeholders as well as paper and web based consent forms and participant information sheets etc... At Leeds we are a way off developing an all singing all dancing system for Ethical Review that embraces Linked Data concepts and interoperates with DMPOnline, Je-S and other things like Project Initiation Forms etc., but I think this is the direction of travel. I am sure my colleagues in the RDM Service core team at Leeds are willing to share documentation and progress and perhaps collaboratively distil further best practice example templates, but I know they are also very busy with setting up repositories and registry/catalogues and ingesting data etc. HTH Andy http://www.geog.leeds.ac.uk/people/a.turner/index.html From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Stephen Gray Sent: 23 March 2015 15:19 To: [log in to unmask]<mailto:[log in to unmask]> Subject: Re: RDM Practice and Ethics approval? Hello Mary, we've published a guide for Bristol researchers (available at http://data.bris.ac.uk/research/storage-and-security/sensitive-data/) which contains example wording for participant consent forms. This only covers sensitive data concerning humans, other types of sensitive data will be covered in further guidance. Best, Stephen On 23 March 2015 at 15:03, Mary Donaldson <[log in to unmask]<mailto:[log in to unmask]>> wrote: Dear All, Apologies for the vague subject line, I'm not entirely sure what I'm actually asking for here... At Glasgow, we're trying to link up (unofficially, behind the scenes) various services that have a hand in RDM practices. We're meeting with the Ethics committee next month to discuss whether there is advice on RDM and the possibility of future data sharing that should be included in the ethics approval process (eg on wording that might go in the plain language statement or in participant consent forms). Do any other institutions already have guidance on this? If so, can any of you provide any examples of wordings that are used? If there is no guidance available, does anyone have any thoughts on what we should be considering? Many thanks, Mary RDM Service Coordinator University of Glasgow -- Snr. Research Data Librarian, Research Data Service, University of Bristol Arts & Social Sciences Library, Tyndall Avenue, Bristol BS8 1TJ (0117) 92 88966