<div dir="ltr">Dear All, <div><br></div><div>I agree and even at my organization we are in the process of creating a proper research data management plan in place. </div></div><br><div class="gmail_quote"><div dir="ltr" class="gmail_attr">On Sat, Mar 13, 2021 at 8:21 AM Fraser Taylor <<a href="mailto:FraserTaylor@cunet.carleton.ca">FraserTaylor@cunet.carleton.ca</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">
<div>
<div>
<div>
<div dir="ltr" style="color:rgb(0,0,0);background-color:rgb(255,255,255)">
Good Evening All,</div>
<div dir="ltr" style="color:rgb(0,0,0);background-color:rgb(255,255,255)">
A good data management plan should include effective archiving as part of a total life cycle approach. The work of the INTERPARES projects at the University of British Columbia over the last few years is very interesting in this respect.</div>
<div dir="ltr" style="color:rgb(0,0,0);background-color:rgb(255,255,255)">
Fraser.</div>
</div>
<div><br>
</div>
<div>Get <a href="https://aka.ms/o0ukef" target="_blank">Outlook for iOS</a></div>
</div>
<hr style="display:inline-block;width:98%">
<div id="gmail-m_3652987435274538374divRplyFwdMsg" dir="ltr"><font face="Calibri, sans-serif" style="font-size:11pt" color="#000000"><b>From:</b> Daureen Nesdill <<a href="mailto:daureen.nesdill@utah.edu" target="_blank">daureen.nesdill@utah.edu</a>><br>
<b>Sent:</b> Friday, March 12, 2021 6:22:10 PM<br>
<b>To:</b> George Alter <<a href="mailto:altergc@umich.edu" target="_blank">altergc@umich.edu</a>><br>
<b>Cc:</b> Fraser Taylor <<a href="mailto:FraserTaylor@Cunet.Carleton.Ca" target="_blank">FraserTaylor@Cunet.Carleton.Ca</a>>; Greg Janée <<a href="mailto:gjanee@ucsb.edu" target="_blank">gjanee@ucsb.edu</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</font>
<div> </div>
</div>
<div lang="EN-US">
<table id="gmail-m_3652987435274538374x_tableStyle">
<tbody>
<tr>
<td>[External Email]</td>
</tr>
</tbody>
</table>
<div>
<div>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">I agree</span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Your email came in as I was reading the new
<a href="https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html" target="_blank">NIH Data Management and Sharing Policy</a>. It states:</span></p>
<p style="margin-bottom:7.5pt;background:white"><span style="font-size:13pt;font-family:Helvetica,sans-serif;color:rgb(51,51,51)">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.</span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Took a look at the paper and will forward to my data repository team. We have started investigating what we can implement.</span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Thank you</span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Daureen</span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<p><b><span style="font-size:11pt;font-family:Calibri,sans-serif">From:</span></b><span style="font-size:11pt;font-family:Calibri,sans-serif"> George Alter [mailto:<a href="mailto:altergc@umich.edu" target="_blank">altergc@umich.edu</a>]
<br>
<b>Sent:</b> Friday, March 12, 2021 4:01 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>>; Greg Janée <<a href="mailto:gjanee@ucsb.edu" target="_blank">gjanee@ucsb.edu</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></p>
<p> </p>
<div>
<div>
<p>Hi Daureen,</p>
<div>
<p> </p>
</div>
<div>
<p>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.</p>
</div>
<div>
<p> </p>
</div>
<div>
<p>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. </p>
</div>
<div>
<p> </p>
</div>
<div>
<p>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.</p>
</div>
<div>
<p> </p>
</div>
<div>
<p style="margin-right:0in;margin-bottom:12pt;margin-left:0.5in">
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>
<div>
<div>
<div>
<div>
<div>
<div>
<div>
<div>
<div>
<p>Best,</p>
</div>
<div>
<p> </p>
</div>
<div>
<p> George</p>
<div>
<p>---------------------------------------------------</p>
</div>
<div>
<div>
<p><span style="font-family:Georgia,serif">George Alter</span></p>
</div>
<div>
<p><span style="font-size:9.5pt;font-family:Georgia,serif">Research Professor Emeritus</span></p>
</div>
<div>
<p><span style="font-family:Georgia,serif">Institute for Social Research, University of Michigan</span></p>
</div>
<div>
<p><span style="font-family:Georgia,serif">Tel: 734-478-0783 </span></p>
</div>
<div>
<p><span style="font-family:Georgia,serif">Email: <a href="mailto:altergc@umich.edu" target="_blank">
altergc@umich.edu</a></span></p>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
</div>
<p> </p>
</div>
</div>
<p> </p>
<div>
<div>
<p>On Fri, Mar 12, 2021 at 4:48 PM Daureen Nesdill <<a href="mailto:daureen.nesdill@utah.edu" target="_blank">daureen.nesdill@utah.edu</a>> wrote:</p>
</div>
<blockquote style="border-top:none;border-right:none;border-bottom:none;border-left:1pt solid rgb(204,204,204);padding:0in 0in 0in 6pt;margin-left:4.8pt;margin-right:0in">
<div>
<div>
<p><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><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)"> </span></p>
<p><span style="font-size:11pt;font-family:Calibri,sans-serif;color:rgb(31,73,125)">Daureen</span></p>
<p><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><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>]
<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">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</span></p>
</div>
</div>
<p> </p>
<div>
<div>
<div>
<p 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> </p>
</div>
<div>
<p>Get <a href="https://aka.ms/o0ukef" target="_blank">
Outlook for iOS</a></p>
</div>
</div>
<div align="center" style="text-align:center">
<hr size="3" width="98%" align="center">
</div>
<div id="gmail-m_3652987435274538374x_gmail-m_4494152037889522585divRplyFwdMsg">
<p><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>
</p>
<div>
<p> </p>
</div>
</div>
<div>
<div>
<p 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">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>
<p> </p>
<table border="1" cellspacing="3" cellpadding="0" width="100%" id="gmail-m_3652987435274538374x_gmail-m_4494152037889522585tableStyle" style="width:100%;background:rgb(255,255,230);border-top:none;border-right:none;border-bottom:none;border-left:6pt solid red">
<tbody>
<tr>
<td style="border:none;padding:2pt">
<p style="line-height:11pt"><span style="font-size:10pt;font-family:Calibri,sans-serif;color:black">This email contains links to content or websites. Always be cautious when clicking on external links or attachments. If in doubt,
please forward suspicious emails to <a href="mailto:phishing@carleton.ca" target="_blank">
phishing@carleton.ca</a>.</span></p>
</td>
</tr>
</tbody>
</table>
<div id="gmail-m_3652987435274538374x_gmail-m_4494152037889522585div2">
<p><span style="font-size:1pt;color:white">-----End of Disclaimer-----</span></p>
</div>
<p> </p>
</div>
</div>
<p>_______________________________________________<br>
CODATA-international mailing list<br>
<a href="mailto:CODATA-international@lists.codata.org" target="_blank">CODATA-international@lists.codata.org</a><br>
<a href="http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org" target="_blank">http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org</a><br>
<br>
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.</p>
</blockquote>
</div>
</div>
</div>
</div>
</div>
</div>
_______________________________________________<br>
CODATA-international mailing list<br>
<a href="mailto:CODATA-international@lists.codata.org" target="_blank">CODATA-international@lists.codata.org</a><br>
<a href="http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org" rel="noreferrer" target="_blank">http://lists.codata.org/mailman/listinfo/codata-international_lists.codata.org</a><br>
<br>
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.<br>
</blockquote></div><br clear="all"><div><br></div>-- <br><div dir="ltr" class="gmail_signature"><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><p style="margin:0px 0px 0.0001pt;color:rgb(34,34,34);font-family:arial,sans-serif;font-size:13px;background-color:rgb(255,255,255)"><span style="font-family:"times new roman",serif;font-size:small">Warm Regards,</span><br></p><p style="margin:0px 0px 0.0001pt;color:rgb(34,34,34);font-family:arial,sans-serif;font-size:13px;background-color:rgb(255,255,255)"><span style="font-family:"times new roman",serif;font-size:small"><br></span></p><p style="margin:0px 0px 0.0001pt;color:rgb(34,34,34);font-family:arial,sans-serif;font-size:13px;background-color:rgb(255,255,255)"><b style="font-size:12.8px;font-family:Arial,Helvetica,sans-serif"><font size="2" face="times new roman, serif">Dr. Shaily Gandhi</font></b><br></p><div style="font-size:12.8px"><div style="font-size:small;color:rgb(136,136,136)"><span style="color:rgb(102,102,102);font-family:"times new roman",serif">Manager IT & Geospatial Solutions </span><br></div><div style="font-size:12.8px"><div style="font-size:small"><font face="times new roman, serif" color="#666666">CEPT Research & Development Foundation (CRDF)</font></div><div style="font-size:small"><font face="times new roman, serif" color="#666666"><span style="font-size:12px;text-align:justify">Near AES Boys Hostel Campus ,</span><span style="font-size:12px;text-align:justify">University Ground</span><br style="font-size:12px;text-align:justify"><span style="font-size:12px;text-align:justify">Navrangpura ,</span><span style="font-size:12px;text-align:justify">Ahmedabad - 380 009</span></font></div></div></div><div><font color="#666666" face="times new roman, serif">Data Carpentry Instructor </font></div><div><font color="#666666" face="times new roman, serif">Skype ID: shaily.gandhi70</font></div><div><font color="#666666" face="times new roman, serif">tel: +91 94282 46420</font></div><div><font color="#666666" face="times new roman, serif">email: <a href="mailto:shaily.gandhi@cept.ac.in" target="_blank">shaily.gandhi@cept.ac.in</a> | <a href="mailto:shaily.gandhi@gmail.com" target="_blank">shaily.gandhi@gmail.com</a></font><span style="font-family:"Bodoni MT Condensed",serif;font-size:12pt"> </span></div><div><p style="margin-bottom:0.0001pt"><br></p><p style="margin-bottom:0.0001pt"><br><br></p></div><p style="color:rgb(34,34,34);font-family:arial,sans-serif;font-size:13px;background-color:rgb(255,255,255)"></p></div></div></div></div></div></div>