<div dir="ltr">Hi, Jon,<div><br></div><div>In my understanding, number one ethical (and legal) rule when dealing with human subject data would be protecting the subjects' privacy. In practice, that means <b>de-identifying the data</b>, i.e., stripping the data of any identifiers such as names, emails, addresses, SS numbers, ID numbers, date of birth, etc., and replacing them with unique research IDs. So that no one can locate or use the data for a specific individual in that dataset. (In my experience, this is done right away, even before data analyses, but definitely before sharing the data.)</div><div><br></div><div>I would also consult the research study's <b>IRB approved protocol and informed consent </b>for additional data protections that were promised to the subjects.</div><div><br></div><div>And then <b>health-related data</b> and information in general are under additional protections. If the IRB approved protocol doesn't cover them, then perhaps you could reach out to the data repository you are planning to use, and consult with them. Describe the type of data you have, and ask for their guidance on what else should be done to the data before it can be shared and reused. You could also find similar studies already in that data repository and see what they did. It's possible that some data would be restricted and not shared widely, or only shared by a special request by and a special arrangement with the researchers who want to reuse it. Again, the data repository should have more guidance on that.</div><div><br></div><div>I hope that helps.</div><div><br></div><div>Best,</div><div><br></div><div>Agnes</div></div><br><div class="gmail_quote"><div dir="ltr" class="gmail_attr">On Fri, Jul 24, 2020 at 4:19 PM Jonathan Petters <<a href="mailto:jpetters@vt.edu">jpetters@vt.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"><div dir="ltr"><div>Hi all,</div><div><br></div><div>In working with a researcher who studies the airborne transmission of pathogens, I'm wondering about the ethics/rules around the public sharing of data resulting from such biosafety-related research.</div><div><br></div><div>I've been looking around for clear guidance, and the most I've found so far is a vague statement from Nature: "It is a condition of publication that authors deposit their data in an
appropriate repository, and agree to make the data publicly available
without restriction, excepting reasonable controls related to human
privacy or biosafety."</div><div><br></div><div>Anyone else here have more clear guidance from an institution/funder/journal that I've been unable to find?</div><div><br></div><div>I can ask our IBC contact here on campus, but thought I'd ask the hivemind first :)<br></div><div><br></div><div>Jon<br>-- <br><div dir="ltr"><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div style="font-size:12.8px"><font size="2" face="arial" color="#000000">Jonathan Petters Ph.D.<br>Assistant Director, Data Management & Curation Services<br></font></div><div style="font-size:12.8px"><font size="2" face="arial" color="#000000">Data Services, University Libraries<br>Virginia Tech<br>(540) 232-8682<br><a href="https://lib.vt.edu/research-teaching/data-services.html" target="_blank">https://lib.vt.edu/research-teaching/data-services.html</a><br></font></div><div style="font-size:12.8px"><font size="2" face="arial" color="#000000">ORCID: 0000-0002-0853-5814<br></font></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div>
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</blockquote></div><br clear="all"><div><br></div>-- <br><div dir="ltr" class="gmail_signature"><div dir="ltr"><div><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><div dir="ltr"><table style="font-size:medium;height:auto;max-width:400px;color:rgb(0,56,101);font-family:freight-sans-pro,Helvetica,Arial,sans-serif"><tbody><tr style="border:none"><td align="left" style="padding:0px"><h3 style="font-size:16px;line-height:1;margin:10px 0px;color:rgb(0,130,186);font-family:freight-sans-pro,Helvetica,Arial,sans-serif">Agnes Jasinska, Ph.D.</h3><p style="font-size:14px;line-height:1;margin:10px 0px;font-family:freight-sans-pro,Helvetica,Arial,sans-serif"><span style="font-style:italic;display:inline">Data Services Specialist<br></span><span style="display:inline">Library & Information Technology<br></span><span style="display:inline">Research Services<br></span><span style="font-weight:bold">Bucknell University</span></p><p style="font-size:14px;line-height:1;margin:10px 0px;font-family:freight-sans-pro,Helvetica,Arial,sans-serif"><span style="line-height:1.3;display:inline">Bertrand Library 111<br></span><a href="mailto:ajj006@bucknell.edu" style="border:none;line-height:1.3;color:rgb(0,130,186);display:inline" target="_blank"><span style="color:rgb(255,105,0)"><strong>e </strong></span><span>ajj006@bucknell.edu</span><br></a><a href="tel:570-577-3309" style="border:none;line-height:1.3;color:rgb(0,56,101);display:inline" target="_blank"><span style="color:rgb(255,105,0)"><strong>p </strong></span>570-577-3309<br></a><span style="line-height:1.3;display:inline"><span style="color:rgb(255,105,0)"><strong>Pronouns </strong></span>She/her/hers<br></span><a href="https://researchbysubject.bucknell.edu/c.php?g=956824" style="border:none;line-height:1.3;color:rgb(0,130,186);display:inline" target="_blank">Data Services Research Guide<br></a><a href="https://sites.google.com/a/bucknell.edu/meet-with-agnes-jasinska/" style="border:none;line-height:1.3;color:rgb(0,130,186);display:inline" target="_blank">Appointment Form for Students<br></a><span></span><span></span><span></span><span></span></p></td></tr></tbody></table><br></div><div dir="ltr"><br><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div><div dir="ltr"><div style="float:left">
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