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rogilmore committed Apr 17, 2024
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46 changes: 41 additions & 5 deletions docs/background/ethics.html
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Expand Up @@ -363,7 +363,7 @@ <h2 id="toc-title">Table of contents</h2>
<li><a href="#sharing-data-collected-without-a-databrary-specific-release" id="toc-sharing-data-collected-without-a-databrary-specific-release" class="nav-link" data-scroll-target="#sharing-data-collected-without-a-databrary-specific-release">Sharing data collected without a Databrary-specific release</a>
<ul>
<li><a href="#seek-formal-permission-from-your-irb" id="toc-seek-formal-permission-from-your-irb" class="nav-link" data-scroll-target="#seek-formal-permission-from-your-irb">Seek formal permission from your IRB</a></li>
<li><a href="#determine-what-sharing-permission-level-applies" id="toc-determine-what-sharing-permission-level-applies" class="nav-link" data-scroll-target="#determine-what-sharing-permission-level-applies">Determine what sharing permission level applies</a></li>
<li><a href="#determine-what-sharing-release-level-applies" id="toc-determine-what-sharing-release-level-applies" class="nav-link" data-scroll-target="#determine-what-sharing-release-level-applies">Determine what sharing release level applies</a></li>
<li><a href="#share-data-with-databrary" id="toc-share-data-with-databrary" class="nav-link" data-scroll-target="#share-data-with-databrary">Share data with Databrary</a></li>
</ul></li>
<li><a href="#grants" id="toc-grants" class="nav-link" data-scroll-target="#grants">Grants</a>
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</section>
<section id="release-levels" class="level2 unnumbered">
<h2 class="unnumbered anchored" data-anchor-id="release-levels">Sharing release levels</h2>
<p><strong>Insert picture of sharing release levels here: https://databrary.org/support/irb/release-levels.html</strong></p>
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<img src="../include/img/db-release-levels.png" class="img-fluid figure-img">
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Figure&nbsp;1: Data sharing release levels
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<p>Databrary has five distinct data sharing or “release” <a href="#fn1" class="footnote-ref" id="fnref1" role="doc-noteref"><sup>1</sup></a> levels:</p>
<ul>
<li><em>Unknown</em></li>
<li><em>Private</em></li>
<li><em>Authorized Users</em></li>
<li><em>Learning Audiences</em></li>
<li><em>Public</em></li>
</ul>
<p>Identified across the site by distinctive icons, the levels communicate what level of data sharing permission was obtained from participants (if any) and what level of access is granted to the data to specific individuals. All files uploaded to Databrary default to <em>Private</em>.</p>
</section>
<section id="sharing-data-collected-without-a-databrary-specific-release" class="level2 unnumbered">
<h2 class="unnumbered anchored" data-anchor-id="sharing-data-collected-without-a-databrary-specific-release">Sharing data collected without a Databrary-specific release</h2>
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<section id="seek-formal-permission-from-your-irb" class="level3 unnumbered">
<h3 class="unnumbered anchored" data-anchor-id="seek-formal-permission-from-your-irb">Seek formal permission from your IRB</h3>
<p>If your release permits you to show recordings in educational or scientific settings, you may apply for formal permission from your IRB to share these recordings with Databrary.</p>
<p>Please note: Databrary intends to store Data indefinitely Some IRBs encourage researchers to include promises to destroy Data, especially recordings, after some fixed time period in order to limit risk to participants. Data destruction is antithetical to data sharing, and Databrary’s Template Release language seeks explicit permission to share data indefinitely. NIH and NSF do not require data destruction clauses. Researchers who wish to store Data on Databrary should remove data destruction clauses from their informed consent documents for new Data and seek IRB guidance about whether archival Data can be shared.</p>
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Note
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<p>Databrary intends to store data indefinitely. Some IRBs encourage researchers to include promises to destroy data, especially recordings, after some fixed time period in order to limit risk to participants. Data destruction is antithetical to data sharing, and Databrary’s Template Release language seeks explicit permission to share data indefinitely. NIH and NSF do not require data destruction. Researchers who wish to store Data on Databrary should remove data destruction clauses from their informed consent documents for new data and seek IRB guidance about whether archival data can be shared.</p>
</div>
</div>
</section>
<section id="determine-what-sharing-permission-level-applies" class="level3 unnumbered">
<h3 class="unnumbered anchored" data-anchor-id="determine-what-sharing-permission-level-applies">Determine what <a href="https://databrary.org/support/irb/release-levels.html">sharing permission level</a> applies</h3>
<section id="determine-what-sharing-release-level-applies" class="level3 unnumbered">
<h3 class="unnumbered anchored" data-anchor-id="determine-what-sharing-release-level-applies">Determine what <a href="https://databrary.org/support/irb/release-levels.html">sharing release level</a> applies</h3>
<p>Authorized Users Release: Your current release mean that recordings can be shared <strong>only</strong> for research use by other Databrary Investigators Learning Audiences: Clips from those recordings be shown in educational and scientific contexts</p>
</section>
<section id="share-data-with-databrary" class="level3 unnumbered">
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</section>
</section>
<section id="footnotes" class="footnotes footnotes-end-of-document" role="doc-endnotes">
<hr>
<ol>
<li id="fn1"><p>The template language Databrary recommends researchers use to document a participant’s permission to share video or audio derives from video or photo ‘release’ documents that are in common use.<a href="#fnref1" class="footnote-back" role="doc-backlink">↩︎</a></p></li>
</ol>
</section>

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Expand Up @@ -391,7 +391,7 @@ <h2 class="unnumbered anchored" data-anchor-id="history">History</h2>
</section>
<section id="support" class="level2 unnumbered">
<h2 class="unnumbered anchored" data-anchor-id="support">Support</h2>
<p>Databrary is grateful to have received financial and in-kind support from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Science Foundation, the Defense Advanced Research Projects Agency, the Society for Research in Child Development, the Alfred P. Sloan Foundation, the James S. McDonnell Foundation, The LEGO Foundation, New York University, and the Pennsylvania State University.</p>
<p>Databrary is grateful to have received financial and in-kind support from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Science Foundation, the Defense Advanced Research Projects Agency, the Society for Research in Child Development, the Alfred P. Sloan Foundation, the James S. McDonnell Foundation, The LEGO Foundation, the John S. Templeton Foundation, New York University, and the Pennsylvania State University.</p>
</section>
<section id="code-base" class="level2 unnumbered">
<h2 class="unnumbered anchored" data-anchor-id="code-base">Code base</h2>
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Expand Up @@ -370,18 +370,18 @@ <h1 class="title">Who and why?</h1>
</header>


<p>This chapter describes who can access Databrary and why they might want to.</p>
<p>As mentioned in the last chapter, many of Databrary’s holdings are restricted to researchers who have secured authorization from their home institution or are affiliated with a researcher who has authorization.</p>
<p>This extra step ensures that sensitive and identifiable data are shared only with people who have formal authorization to access it, who have research ethics training, and who are affiliated with institutions that have agreed to monitor data use. Databrary calls these people <em>Authorized Investigators</em> and <em>Affiliates</em>. <em>Authorized Investigators</em> may request access to restricted data and may share data with <em>Affiliates</em> and other <em>Authorized Investigators</em>, and sometimes with the general public. <em>Affiliates</em> may request access to restricted data through an <em>Authorized Investigators</em> but may not share data with other users.</p>
<p>This section describes who can access Databrary and why they might want to.</p>
<p>As mentioned in the last chapter, many of Databrary’s holdings are restricted to researchers who have secured authorization from their home institution or are affiliated with (or sponsored by) a researcher who has authorization.</p>
<p>This extra step ensures that sensitive and identifiable data are shared only with people who have formal authorization to access it, who have research ethics training, and who are affiliated with institutions that have agreed to monitor data use. Databrary calls these people <a href="../more-information/definitions.html#authorized-investigator"><em>Authorized Investigators</em></a> and <a href="../more-information/definitions.html#affiliate"><em>Affiliates</em></a>. <em>Authorized Investigators</em> may request access to restricted data and may share data with <em>Affiliates</em> and other <em>Authorized Investigators</em>, and sometimes with the general public. <em>Affiliates</em> may request access to restricted data through an <em>Authorized Investigators</em> but may not share data with other users.</p>
<p>All parties, even members of the public, are responsible for the appropriate use of Databrary and the materials stored there. Responsibilities that apply to everyone are set out in the <a href="https://databrary.org/about/policies/terms.html">Databrary Terms and Conditions of Use</a>. For <em>Authorized Investigators</em> and <em>Affiliates</em>, there are additional responsibilities. <em>Authorized Investigators</em> and <em>Affiliates</em> must ensure that their use of Databrary complies with the terms of the <a href="../appendices/access_agreement.html">agreement</a> their institution has signed to permit access to Databrary.</p>
<section id="whats-my-status" class="level2 unnumbered">
<h2 class="unnumbered anchored" data-anchor-id="whats-my-status">What’s my status</h2>
<p>Here are some things to consider about whether you qualify as an <em>Authorized Investigator</em> or as an <em>Affiliate</em>:</p>
<p>I am eligible to become an <em>Authorized Investigator</em> if:</p>
<ul>
<li><p>I can conduct independent research;</p></li>
<li><p>I can conduct independent research at my institution;</p></li>
<li><p>I can submit funding proposals as the lead investigator;</p></li>
<li><p>I have Principal Investigator (PI) status or a tenure-track faculty position at my Institution;</p></li>
<li><p>I have Principal Investigator (PI) status or a tenure-track faculty position at my institution;</p></li>
<li><p>My Institution maintains or uses an ethics board to review and approve research involving human subjects (or animals where relevant);</p></li>
<li><p>I have current training that addresses research ethics with human subject (e.g.&nbsp;<a href="https://about.citiprogram.org/">CITI</a> training);</p></li>
<li><p>I would like to reuse or upload data to Databrary. I need to read and sign a Databrary Access agreement and its’ Annexes (I, II, III) before I may be authorized.</p></li>
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