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<p>Hi George,<br>
</p>
<div class="moz-cite-prefix">Am 13.03.21 um 00:01 schrieb George
Alter:<br>
</div>
<blockquote type="cite"
cite="mid:CAB4FXQCKT7SG3GDHM2VGa9jWW=VeN+R-oUBje2Urag1+0NBrpQ@mail.gmail.com">
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<div dir="ltr">Hi Daureen,
<div><br>
</div>
<div>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. <br>
</div>
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</blockquote>
<p>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", <a class="moz-txt-link-freetext" href="https://doi.org/10.5281/zenodo.3923602">https://doi.org/10.5281/zenodo.3923602</a>, say in
the guideline on "Archiving", p.20, <br>
</p>
<blockquote>
<p>"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."</p>
</blockquote>
<p>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. <br>
</p>
<blockquote type="cite"
cite="mid:CAB4FXQCKT7SG3GDHM2VGa9jWW=VeN+R-oUBje2Urag1+0NBrpQ@mail.gmail.com">
<div dir="ltr">
<div dir="ltr">
<div> 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, </div>
</div>
</div>
</blockquote>
<p>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).</p>
<p>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).</p>
<p>best,</p>
<p>Hans<br>
</p>
<blockquote type="cite"
cite="mid:CAB4FXQCKT7SG3GDHM2VGa9jWW=VeN+R-oUBje2Urag1+0NBrpQ@mail.gmail.com">
<div dir="ltr">
<div dir="ltr">
<div>but it should include a promise to convey the data to a
trusted data repository with the commitment and capacity to
protect sensitive information.</div>
<div><br>
</div>
<div>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. </div>
<div><br>
</div>
<div>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.</div>
<div><br>
</div>
<div>
<p class="MsoNormal" style="margin:0in 0in 12pt
0.5in;font-size:12pt;font-family:"Times New
Roman",serif">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. <i>GigaScience</i>,
9(2). doi:10.1093/gigascience/giz165</p>
</div>
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<div>Best,</div>
<div dir="ltr"><br>
</div>
<div dir="ltr"> George
<div>---------------------------------------------------</div>
<div>
<div><font face="georgia, serif">George
Alter</font></div>
<div><span
style="font-family:georgia,serif;font-size:12.8px">Research
Professor Emeritus</span><br>
</div>
<div><font face="georgia, serif">Institute
for Social Research, University
of Michigan</font></div>
<div><span
style="font-family:georgia,serif">Tel:
734-478-0783 </span><br>
</div>
<div><font face="georgia, serif">Email:
<a
href="mailto:altergc@umich.edu"
target="_blank"
moz-do-not-send="true">altergc@umich.edu</a></font></div>
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<div class="gmail_quote" style="">
<div dir="ltr" class="gmail_attr">On Fri, Mar 12, 2021 at 4:48
PM Daureen Nesdill <<a
href="mailto:daureen.nesdill@utah.edu"
moz-do-not-send="true">daureen.nesdill@utah.edu</a>>
wrote:<br>
</div>
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0.8ex;border-left:1px solid
rgb(204,204,204);padding-left:1ex">
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<p class="MsoNormal"><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">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.. </span></p>
<p class="MsoNormal"><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<p class="MsoNormal"><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Daureen</span></p>
<p class="MsoNormal"><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<div>
<div
style="border-right:none;border-bottom:none;border-left:none;border-top:1pt
solid rgb(225,225,225);padding:3pt 0in 0in">
<p class="MsoNormal"><b><span
style="font-size:11pt;font-family:Calibri,sans-serif">From:</span></b><span
style="font-size:11pt;font-family:Calibri,sans-serif"> Fraser Taylor
[mailto:<a
href="mailto:FraserTaylor@Cunet.Carleton.Ca"
target="_blank" moz-do-not-send="true">FraserTaylor@Cunet.Carleton.Ca</a>]
<br>
<b>Sent:</b> Friday, March 12, 2021 10:26 AM<br>
<b>To:</b> Greg Janée <<a
href="mailto:gjanee@ucsb.edu" target="_blank"
moz-do-not-send="true">gjanee@ucsb.edu</a>>;
Daureen Nesdill <<a
href="mailto:daureen.nesdill@utah.edu"
target="_blank" moz-do-not-send="true">daureen.nesdill@utah.edu</a>><br>
<b>Cc:</b> Greenberg,Jane <<a
href="mailto:jg3243@drexel.edu"
target="_blank" moz-do-not-send="true">jg3243@drexel.edu</a>>;
RICE Robin <<a href="mailto:R.Rice@ed.ac.uk"
target="_blank" moz-do-not-send="true">R.Rice@ed.ac.uk</a>>;
<a
href="mailto:codata-international@lists.codata.org"
target="_blank" moz-do-not-send="true">codata-international@lists.codata.org</a><br>
<b>Subject:</b> Re: [CODATA-international]
information request for a Friday</span></p>
</div>
</div>
<p class="MsoNormal"> </p>
<div>
<div>
<div>
<p class="MsoNormal" style="background:white"><span
style="color:black">Using de-identified data
helps with some issues but does not resolve
all of the problems.</span></p>
</div>
</div>
<div>
<p class="MsoNormal"> </p>
</div>
<div>
<p class="MsoNormal">Get <a
href="https://aka.ms/o0ukef" target="_blank"
moz-do-not-send="true">Outlook for iOS</a></p>
</div>
</div>
<div class="MsoNormal" style="text-align:center"
align="center">
<hr width="98%" size="3" align="center">
</div>
<div id="gmail-m_4494152037889522585divRplyFwdMsg">
<p class="MsoNormal"><b><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:black">From:</span></b><span
style="font-size:11pt;font-family:Calibri,sans-serif;color:black"> Greg
Janée <<a href="mailto:gjanee@ucsb.edu"
target="_blank" moz-do-not-send="true">gjanee@ucsb.edu</a>><br>
<b>Sent:</b> Friday, March 12, 2021 12:15:36 PM<br>
<b>To:</b> Daureen Nesdill <<a
href="mailto:daureen.nesdill@utah.edu"
target="_blank" moz-do-not-send="true">daureen.nesdill@utah.edu</a>><br>
<b>Cc:</b> Fraser Taylor <<a
href="mailto:FraserTaylor@Cunet.Carleton.Ca"
target="_blank" moz-do-not-send="true">FraserTaylor@Cunet.Carleton.Ca</a>>;
Greenberg,Jane <<a
href="mailto:jg3243@drexel.edu" target="_blank"
moz-do-not-send="true">jg3243@drexel.edu</a>>;
RICE Robin <<a href="mailto:R.Rice@ed.ac.uk"
target="_blank" moz-do-not-send="true">R.Rice@ed.ac.uk</a>>;
<a
href="mailto:codata-international@lists.codata.org"
target="_blank" moz-do-not-send="true">codata-international@lists.codata.org</a>
<<a
href="mailto:codata-international@lists.codata.org"
target="_blank" moz-do-not-send="true">codata-international@lists.codata.org</a>><br>
<b>Subject:</b> Re: [CODATA-international]
information request for a Friday</span>
</p>
<div>
<p class="MsoNormal"> </p>
</div>
</div>
<div>
<div>
<p class="MsoNormal" style="margin-bottom:12pt"><span
style="font-size:11pt">[External Email]<br>
<br>
What is the concern with using de-identified
data?<br>
<br>
> On Mar 12, 2021, at 8:07 AM, Daureen
Nesdill <<a
href="mailto:daureen.nesdill@utah.edu"
target="_blank" moz-do-not-send="true">daureen.nesdill@utah.edu</a>>
wrote:<br>
> 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.</span></p>
</div>
</div>
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<pre class="moz-quote-pre" wrap="">_______________________________________________
CODATA-international mailing list
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<a class="moz-txt-link-freetext" href="http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org">http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org</a>
The CODATA International list is for announcement of of activities, events and outputs by CODATA and by other organisations and initiatives. It is also for discussion of all issues related to data. It is an open subscription list with only lightweight moderation to remove spam. Messages posted on the list by third parties do not necessarily imply endorsement by CODATA.
</pre>
</blockquote>
<pre class="moz-signature" cols="70">--
Hans Pfeiffenberger
Consultant, scientific data infrastructures & policies
<a class="moz-txt-link-abbreviated" href="http://www.hans-pfeiffenberger.de">www.hans-pfeiffenberger.de</a></pre>
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