Hi,
We are just in the process of expanding the example consent forms and info sheets on our website. (https://www.ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/consent-forms)
We would love to add more (I am collecting ones from this list that are public), and we are especially interested in any that address data sharing for new and novel (or any challenging) data types. I will alert the list in Jan when these go live.
Best,
Libby
-----Original Message-----
From: Research Data Management discussion list [mailto:[log in to unmask]] On Behalf Of Marta Teperek
Sent: 16 December 2016 18:27
To: [log in to unmask]
Subject: Re: Open consent from and information sheet templates
Hi Neil,
I agree that this is a promise which might be difficult to keep! Managed access repositories are definitely great, but I'm also interested in situations where patients agree to share their data openly (without determining the purpose). In this particular case the patient information sheet seems to be a bit of a mix up between open sharing and managed access sharing (note that the first sentence talks about access by anyone, whereas the subsequent sentence talks about researchers, which might be somewhat confusing for the study participants!).
Do you or other people have more examples of consent forms and information sheets that they could share so that we could start building up a database of resources, stimulate these discussions and start identifying best practices?
Best wishes,
Marta
Marta Teperek, PhD
Research Data Facility Manager
Cambridge University Library / Research Operations Office
e-mail: [log in to unmask]
tel. 01223 333138 (Friday - Wednesday)
tel. 01223 761652 (Thursday)
Twitter: @martateperek
You can arrange a meeting with me here
Have you already seen our data management plan support service? http://www.data.cam.ac.uk/DMPsupport
-----Original Message-----
From: N.M. Walker [mailto:[log in to unmask]]
Sent: 16 December 2016 17:52
To: Research Data Management discussion list <[log in to unmask]>
Cc: Marta Teperek <[log in to unmask]>
Subject: Re: Open consent from and information sheet templates
Thanks for sharing these Marta.
I found the emphasis on the ability to anonymise data in the PIS
worrying:
"In addition, there is an increasing emphasis on ‘Open Science’ and some scientific journals are now making deposition of Open Data – i.e. data that can be accessed by anyone – condition of publication. Therefore anonymised data may also be shared with other researchers around the world. We take steps to ensure that data analysed outside the CBSU are stripped of any personally identifiable information that could link them to an individual, including in the case of brain imaging data ensuring that facial features cannot be reconstructed. This means that your identity will never be disclosed to anyone else, unless we first seek written permission from you."
This is a bold, and probably unsupportable promise.
Instead, shouldn't we be promoting the use of managed access repositories for human subject data?
Yours
Neil
PS: I have a paper up on BioRxiv on the subject -
http://biorxiv.org/content/early/2016/11/03/084921
On 2016-12-16 13:49, Marta Teperek wrote:
> Dear All,
>
> Many researchers at Cambridge ask about open consent forms and
> supporting information sheets. The MRC CBU at Cambridge agreed to
> share their templates with others - see attached.
>
> Three projects have already used these templates for their ethics
> review - all approved.
>
> I thought that some of you might find these useful as well.
>
> Best wishes,
>
> Marta
>
> Marta Teperek, PhD
>
> Research Data Facility Manager
>
> Cambridge University Library / Research Operations Office
>
> e-mail: [log in to unmask]
>
> tel. 01223 333138 (Friday - Wednesday)
>
> tel. 01223 761652 (Thursday)
>
> Twitter: @martateperek [1]
>
> You can arrange a meeting with me here [2]
>
> Have you already seen our data management plan support service?
> http://www.data.cam.ac.uk/DMPsupport [3]
>
>
>
> Links:
> ------
> [1] https://twitter.com/martateperek
> [2]
> https://calendar.google.com/calendar/embed?src=veud0sn3qlfo8o5p7r4abac
> 968%40group.calendar.google.com&ctz=Europe/London
> [3] http://www.data.cam.ac.uk/DMPsupport
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