[CODATA-international] information request for a Friday

Hans Pfeiffenberger hp at hans-pfeiffenberger.de
Sat Mar 13 10:05:42 EST 2021


Hi George,

Am 13.03.21 um 00:01 schrieb George Alter:
> 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.

and even if data is not to be shared openly, good scientific practise 
forbids destroying data *after the project*. E.g., in Germany, the 
"Guidelines for Safeguarding Good Research Practice. Code of 
Conduct",  https://doi.org/10.5281/zenodo.3923602, say in the 
guideline on "Archiving", p.20,

    "When scientific and academic findings are made publicly
    available, the research data (generally raw data) on which they
    are based are generally archived in an accessible and identifiable
    manner for a period of ten years at the institution where the data
    were produced or in cross-location repositories."

In the case of sensitive data, most institutional data infrastructures 
will not be designed and staffed to maintain tight security while 
ensuring adequate access for legitimate reasons. IMHO, this alone 
would mean: Sensitive data have to go to disciplinary repositories, 
which have to be outfitted with adequate resources, human and 
technical, and should be certified in a meaningful way.

> 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,

Unfortunately, the European General Data Protection Regulation, GDPR, 
requires very specific consent and disclosure about the purposes for 
which data will be served. Obviously, that excludes such purposes 
which are as yet unknown.  Consequently, scientific body have objected 
vehemently to the draft of GDPR. I understand that there are now 
legal, but extremely cumbersome workarounds (which no scientist in 
their right mind would take).

Of course, the German is the most restrictive of national 
implementations of the GDPR. As it appears, this has severely hindered 
epidemiological research of SARS-Cov2, so I hope this will lead to 
reconsideration of its excesses (over the next decade or so).

best,

Hans

> 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.
>
>     Get Outlook for iOS <https://aka.ms/o0ukef>
>
>     ----------------------------------------------------------------------
>
>     *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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-- 
Hans Pfeiffenberger
Consultant, scientific data infrastructures & policies
www.hans-pfeiffenberger.de

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