[CODATA-international] information request for a Friday

Sat Mar 13 00:35:29 EST 2021

Dear All,

I agree and even at my organization we are in  the process of creating a
proper research data management plan in place.

On Sat, Mar 13, 2021 at 8:21 AM Fraser Taylor <
FraserTaylor at cunet.carleton.ca> wrote:

> Good Evening All,
> A good data management plan should include effective archiving as part of
> a total life cycle approach. The work of the INTERPARES  projects at the
> University of British Columbia over the last few years is very interesting
> in this respect.
> Fraser.
>
> Get Outlook for iOS <https://aka.ms/o0ukef>
> ------------------------------
> *From:* Daureen Nesdill <daureen.nesdill at utah.edu>
> *Sent:* Friday, March 12, 2021 6:22:10 PM
> *To:* George Alter <altergc at umich.edu>
> *Cc:* Fraser Taylor <FraserTaylor at Cunet.Carleton.Ca>; Greg Janée <
> gjanee at ucsb.edu>; codata-international at lists.codata.org <
> codata-international at lists.codata.org>
> *Subject:* RE: [CODATA-international] information request for a Friday
>
> [External Email]
>
> I agree
>
> Your email came in as I was reading the new NIH Data Management and
> Sharing Policy
> <https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html>. It
> states:
>
> NIH strongly encourages researchers to plan for how data management and
> sharing will be addressed in the informed consent process, including
> communicating with prospective participants how their scientific data are
> expected to be used and shared. Researchers should consider whether access
> to scientific data derived from humans, even if de-identified and lacking
> explicit limitations on subsequent use, should be controlled.
>
> Took a look at the paper and will forward to my data repository team. We
> have started investigating what we can implement.
>
>
>
> Thank you
>
> Daureen
>
>
>
> *From:* George Alter [mailto:altergc at umich.edu]
> *Sent:* Friday, March 12, 2021 4:01 PM
> *To:* Daureen Nesdill <daureen.nesdill at utah.edu>
> *Cc:* Fraser Taylor <FraserTaylor at cunet.carleton.ca>; Greg Janée <
> gjanee at ucsb.edu>; codata-international at lists.codata.org
> *Subject:* Re: [CODATA-international] information request for a Friday
>
>
>
> Hi Daureen,
>
>
>
> Consent forms certainly should address the issue of data sharing.
> Language like “the data will be destroyed at the end of the project” is
> much less common than it used to be,  About a decade ago NIH made a very
> strong statement against language of that kind and in favor of data
> sharing.  Most universities in the US provide language for informed consent
> that is consistent with NIH guidelines.  In my opinion, informed consent
> does not need to specify how the data will be shared, because the
> technologies for doing so are still evolving, but it should include a
> promise to convey the data to a trusted data repository with the commitment
> and capacity to protect sensitive information.
>
>
>
> Tribal governments in the US have been active in defining conditions for
> data use that protect not only individual identities but also community
> values.  I was peripherally involved in one case where the tribe insisted
> on reviewing research proposals before access to the data was provided as
> well as papers before publication.
>
>
>
> Data repositories have done a lot of work on procedures and technologies
> for sharing data in a secure way.  There are a range of options from online
> access for anonymous data to physical data enclaves with high levels of
> security.  The latter allow repository managers to review work before it is
> removed from the enclave to be sure that identifiable information will not
> be released.    We explain and categorize access conditions for
> confidential data in this paper.
>
>
>
> Alter, George, Gonzalez-Beltran, Alejandra, Ohno-Machado, Lucila, &
> Rocca-Serra, Philippe (2020). The Data Tags Suite (DATS) model for
> discovering data access and use requirements. *GigaScience*, 9(2).
> doi:10.1093/gigascience/giz165
>
> Best,
>
>
>
>        George
>
> ---------------------------------------------------
>
> George Alter
>
> Research Professor Emeritus
>
> Institute for Social Research, University of Michigan
>
> Tel: 734-478-0783
>
> Email: altergc at umich.edu
>
>
>
>
>
> On Fri, Mar 12, 2021 at 4:48 PM Daureen Nesdill <daureen.nesdill at utah.edu>
> wrote:
>
> The original consent form signed by the participant usually does not
> address the sharing of data. We see “the data will be destroyed at the end
> of the project”, etc..
>
>
>
> Daureen
>
>
>
> *From:* Fraser Taylor [mailto:FraserTaylor at Cunet.Carleton.Ca]
> *Sent:* Friday, March 12, 2021 10:26 AM
> *To:* Greg Janée <gjanee at ucsb.edu>; Daureen Nesdill <
> daureen.nesdill at utah.edu>
> *Cc:* Greenberg,Jane <jg3243 at drexel.edu>; RICE Robin <R.Rice at ed.ac.uk>;
> codata-international at lists.codata.org
> *Subject:* Re: [CODATA-international] information request for a Friday
>
>
>
> Using de-identified data helps with some issues but does not resolve all
> of the problems.
>
>
>
> Get Outlook for iOS <https://aka.ms/o0ukef>
> ------------------------------
>
> *From:* Greg Janée <gjanee at ucsb.edu>
> *Sent:* Friday, March 12, 2021 12:15:36 PM
> *To:* Daureen Nesdill <daureen.nesdill at utah.edu>
> *Cc:* Fraser Taylor <FraserTaylor at Cunet.Carleton.Ca>; Greenberg,Jane <
> jg3243 at drexel.edu>; RICE Robin <R.Rice at ed.ac.uk>;
> codata-international at lists.codata.org <
> codata-international at lists.codata.org>
> *Subject:* Re: [CODATA-international] information request for a Friday
>
>
>
> [External Email]
>
> What is the concern with using de-identified data?
>
> > On Mar 12, 2021, at 8:07 AM, Daureen Nesdill <daureen.nesdill at utah.edu>
> wrote:
> > For the record, at this year’s RDAP Summit we learned that those in
> clinical research are learning to redo their consent forms to include, if
> appropriate, the sharing of the de-identified data beyond the research
> project.
>
>
>
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-- 

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