[CODATA-international] information request for a Friday

George Alter altergc at umich.edu
Fri Mar 12 18:01:25 EST 2021

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).

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>

> 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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