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Adjusting the focus: A public health ethics approach to data research

机译：调整重点：数据研究的公共卫生道德方法

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Abstract > This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest. </abstract> </span> <span class="z_kbtn z_kbtnclass hoverxs" style="display: none;">展开▼</span> </div> <div class="translation abstracttxt"> <span class="zhankaihshouqi fivelineshidden" id="abstract"> <span>机译：</span><Abstract Type =“main”XML：ID =“Bioe12551-ABS-ABS-0001”XML：Lang =“en”> <标题类型=“main”>抽象</ title> > 本文争辩说，对健康数据研究监管的研究伦理方法在人口水平研究和大数据时代无益，因为它导致主要关注同意（Meta，广泛，动态和/或具体同意）。最近的两个指南 - 2016年WMA 关于卫生数据库和Biobanks的道德考虑的宣言</ i> 和修订的CIOMS 涉及人类的健康相关研究的国际道德准则</ i> - 重点关注越来越依赖于研究的健康数据。但作为研究道德文件，他们仍然（到不同程度），专注于同意和个人控制数据使用。如果不是不可能的话，许多当前和未来的健康数据的使用使个人同意不切实际。次要数据用途的许多风险适用于社区和利益相关者而不是单个数据科目。从研究伦理的转变为公共卫生镜头带来了一个不同的问题，进入了视野：数据使用的好处和负担如何分配，如何赋予具有合法决策能力的数据研究赋予社区？我提出了一个公共卫生伦理框架 - 基于公共利益，比例，公平，信任和问责制 - 提供了更合适的工具来评估健康数据的道德用途。对数据研究的公共卫生方法的主要优点是，更有可能促进关于权力，正义和公平的争论，并突出数据使用何时采用公共利益而决定的复杂性。 </ p> </摘要> </span> <span class="z_kbtn z_kbtnclass hoverxs" style="display: none;">展开▼</span> </div> </div> <div class="record"> <h2 class="all_title" id="enpatent33" >著录项</h2> <ul> <li> <span class="lefttit">来源</span> <div style="width: 86%;vertical-align: text-top;display: inline-block;"> <a href='/journal-foreign-14793/'>《Bioethics》</a> <b style="margin: 0 2px;">|</b><span>2019年第3期</span><b style="margin: 0 2px;">|</b><span>共10页</span> </div> </li> <li> <div class="author"> <span class="lefttit">作者</span> <p id="fAuthorthree" class="threelineshidden zhankaihshouqi"> <a href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=Ballantyne Angela&option=202" target="_blank" rel="nofollow">Ballantyne Angela;</a> </p> <span class="z_kbtnclass z_kbtnclassall hoverxs" id="zkzz" style="display: none;">展开▼</span> </div> </li> <li> <div style="display: flex;"> <span class="lefttit">作者单位</span> <div style="position: relative;margin-left: 3px;max-width: 639px;"> <div class="threelineshidden zhankaihshouqi" id="fOrgthree"> <p>University of Otago WellingtonWellington New Zealand;</p> </div> <span class="z_kbtnclass z_kbtnclassall hoverxs" id="zhdw" style="display: none;">展开▼</span> </div> </div> </li> <li > <span class="lefttit">收录信息</span> <span style="width: 86%;vertical-align: text-top;display: inline-block;"></span> </li> <li> <span class="lefttit">原文格式</span> <span>PDF</span> </li> <li> <span class="lefttit">正文语种</span> <span>eng</span> </li> <li> <span class="lefttit">中图分类</span> <span><a href="https://www.zhangqiaokeyan.com/clc/15.html" title="生物科学">生物科学;</a></span> </li> <li class="antistop"> <span class="lefttit">关键词</span> <p style="width: 86%;vertical-align: text-top;"> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=CIOMS&option=203" rel="nofollow">CIOMS;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=data&option=203" rel="nofollow">data;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=health information&option=203" rel="nofollow">health information;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=informed consent&option=203" rel="nofollow">informed consent;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=public health ethics&option=203" rel="nofollow">public health ethics;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=research ethics&option=203" rel="nofollow">research ethics;</a> <a style="color: #3E7FEB;" href="/search.html?doctypes=4_5_6_1-0_4-0_1_2_3_7_9&sertext=social value&option=203" rel="nofollow">social value;</a> </p> <div class="translation"> 机译：CIOM;数据;健康信息;知情同意;公共卫生道德;研究道德;社会价值; 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style="max-width: initial;height: auto;word-break: break-all;white-space: initial;text-overflow: initial;overflow: initial;"> <span>机译：为光学缺陷检查设备的聚焦透镜系统准备聚焦调整数据的方法，以及在该方法中使用的聚焦调整晶片 </span> </p> </li> <li> <div> <b>4. </b><a class="enjiyixqcontent" href="/patent-detail/06130435651924.html">Method for preparing focus-adjustment data for focusing lens system of optical defect-inspection apparatus, and focus adjustment wafer used in such method</a> <b>[P]</b> . <span> 外国专利：  US2007229811A1 </span> <span> . 2007-10-04</span> </div> <p class="zwjiyix translation" style="max-width: initial;height: auto;word-break: break-all;white-space: initial;text-overflow: initial;overflow: initial;"> <span>机译：为光学缺陷检查装置的聚焦透镜系统准备聚焦调整数据的方法以及在该方法中使用的聚焦调整晶片 </span> </p> </li> <li> <div> <b>5. </b><a class="enjiyixqcontent" href="/patent-detail/06130408980858.html">HealthScout will be an app that uses location based services to connect a client with an allied health professional. They will be able to search key words that professionals list as their specialty focus and consenting patients and health practitioners will be able to share medical records between them. The app will also assist in improving the efficiency of the initial consultation through electronic delivery of consent waivers and any evaluation or assessment tools. Only a prototype of screens currently exists and there is no programmed data input or output as of yet.</a> <b>[P]</b> . <span> 外国专利：  AU2017101060A4 </span> <span> . 2017-09-07</span> </div> <p class="zwjiyix translation" style="max-width: initial;height: auto;word-break: break-all;white-space: initial;text-overflow: initial;overflow: initial;"> <span>机译：HealthScout将是一个使用基于位置的服务将客户与专职医疗专业人员联系起来的应用程序。他们将能够搜索专业人员列出的关键词作为他们的专业重点，并且同意的患者和卫生从业人员将能够在他们之间共享病历。该应用程序还将通过电子方式提供同意豁免和任何评估或评估工具来帮助提高初步咨询的效率。当前仅存在屏幕原型，并且到目前为止还没有编程的数据输入或输出。 </span> </p> </li> </ul> </div> </div> </div> <div class="theme cardcommon" style="overflow: auto;display:none"> <h3 class="all_title" id="enpatent55">相关主题</h3> <ul id="subject"> </ul> </div> </div> </div> </div> <div class="right rightcon"> <div class="details_img cardcommon clearfix" style="margin-bottom: 10px;display:none;" > </div> </div> </div> <div id="thesis_get_original1" class="downloadBth" style="bottom: 19px;z-index: 999;" 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