[CODATA-international] information request for a Friday

[Daureen Nesdill]

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<mailto:altergc at umich.edu>


On Fri, Mar 12, 2021 at 4:48 PM Daureen Nesdill <daureen.nesdill at utah.edu<mailto: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<mailto:FraserTaylor at Cunet.Carleton.Ca>]
Sent: Friday, March 12, 2021 10:26 AM
To: Greg Janée <gjanee at ucsb.edu<mailto:gjanee at ucsb.edu>>; Daureen Nesdill <daureen.nesdill at utah.edu<mailto:daureen.nesdill at utah.edu>>
Cc: Greenberg,Jane <jg3243 at drexel.edu<mailto:jg3243 at drexel.edu>>; RICE Robin <R.Rice at ed.ac.uk<mailto:R.Rice at ed.ac.uk>>; codata-international at lists.codata.org<mailto: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.

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From: Greg Janée <gjanee at ucsb.edu<mailto:gjanee at ucsb.edu>>
Sent: Friday, March 12, 2021 12:15:36 PM
To: Daureen Nesdill <daureen.nesdill at utah.edu<mailto:daureen.nesdill at utah.edu>>
Cc: Fraser Taylor <FraserTaylor at Cunet.Carleton.Ca<mailto:FraserTaylor at Cunet.Carleton.Ca>>; Greenberg,Jane <jg3243 at drexel.edu<mailto:jg3243 at drexel.edu>>; RICE Robin <R.Rice at ed.ac.uk<mailto:R.Rice at ed.ac.uk>>; codata-international at lists.codata.org<mailto:codata-international at lists.codata.org> <codata-international at lists.codata.org<mailto: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<mailto: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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