<div dir="ltr"><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. 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.</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><div><div><div dir="ltr" class="gmail_signature" data-smartmail="gmail_signature"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><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">altergc@umich.edu</a></font></div></div></div></div></div></div></div></div></div></div></div></div></div><br><input name="virtru-metadata" type="hidden" value="{"email-policy":{"state":"closed","expirationUnit":"days","disableCopyPaste":false,"disablePrint":false,"disableForwarding":false,"enableNoauth":false,"persistentProtection":false,"expandedWatermarking":false,"expires":false,"isManaged":false},"attachments":{},"compose-id":"7","compose-window":{"secure":false}}"></div></div><br><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">daureen.nesdill@utah.edu</a>> wrote:<br></div><blockquote class="gmail_quote" style="margin:0px 0px 0px 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.. <u></u><u></u></span></p>
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<p class="MsoNormal"><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Daureen<u></u><u></u></span></p>
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<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">FraserTaylor@Cunet.Carleton.Ca</a>]
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<b>Sent:</b> Friday, March 12, 2021 10:26 AM<br>
<b>To:</b> Greg Janée <<a href="mailto:gjanee@ucsb.edu" target="_blank">gjanee@ucsb.edu</a>>; Daureen Nesdill <<a href="mailto:daureen.nesdill@utah.edu" target="_blank">daureen.nesdill@utah.edu</a>><br>
<b>Cc:</b> Greenberg,Jane <<a href="mailto:jg3243@drexel.edu" target="_blank">jg3243@drexel.edu</a>>; RICE Robin <<a href="mailto:R.Rice@ed.ac.uk" target="_blank">R.Rice@ed.ac.uk</a>>; <a href="mailto:codata-international@lists.codata.org" target="_blank">codata-international@lists.codata.org</a><br>
<b>Subject:</b> Re: [CODATA-international] information request for a Friday<u></u><u></u></span></p>
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<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.<u></u><u></u></span></p>
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<p class="MsoNormal">Get <a href="https://aka.ms/o0ukef" target="_blank">Outlook for iOS</a><u></u><u></u></p>
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<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">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">daureen.nesdill@utah.edu</a>><br>
<b>Cc:</b> Fraser Taylor <<a href="mailto:FraserTaylor@Cunet.Carleton.Ca" target="_blank">FraserTaylor@Cunet.Carleton.Ca</a>>; Greenberg,Jane <<a href="mailto:jg3243@drexel.edu" target="_blank">jg3243@drexel.edu</a>>; RICE Robin <<a href="mailto:R.Rice@ed.ac.uk" target="_blank">R.Rice@ed.ac.uk</a>>;
<a href="mailto:codata-international@lists.codata.org" target="_blank">codata-international@lists.codata.org</a> <<a href="mailto:codata-international@lists.codata.org" target="_blank">codata-international@lists.codata.org</a>><br>
<b>Subject:</b> Re: [CODATA-international] information request for a Friday</span>
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What is the concern with using de-identified data?<br>
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> On Mar 12, 2021, at 8:07 AM, Daureen Nesdill <<a href="mailto:daureen.nesdill@utah.edu" target="_blank">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.<u></u><u></u></span></p>
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