Hi Marta
as ever, you can find good practice at the UK Data Archive:
https://www.ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/consent-forms
As a hint to any funders on the list: if you are asking your researchers
to deposit data in archives for data sharing, your recommended patient
information sheets/consent forms should mention it!
Cheers
Neil
On 2016-12-16 18:26, Marta Teperek wrote:
> 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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