Practical Tips for Ethical Data Sharing
Practical Tips for Ethical Data Sharing
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DOI：
10.1177/2515245917747656
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发表时间：
2018-03-01
影响因子：
13.6
通讯作者：
Meyer, Michelle N.
中科院分区：
文献类型：
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作者：
Meyer, Michelle N.
本教程以有效、道德和符合联邦通用规则的方式提供了共享研究数据的实际做与不做。我首先考虑将数据共享计划纳入研究的最佳实践，讨论在同意表格和机构审查委员会申请中应该说什么和不应该说什么，数据去识别的工具，以及如何考虑重新识别的风险，以及在选择数据存储库时应该考虑什么。转向已经收集的数据，我讨论了在同意书中要么对数据共享保持沉默，要么明确向参与者承诺数据不会共享的情况下，共享数据所带来的伦理和监管问题。最后，我讨论了共享“公共”数据的伦理问题。
This Tutorial provides practical dos and don'ts for sharing research data in ways that are effective, ethical, and compliant with the federal Common Rule. I first consider best practices for prospectively incorporating data-sharing plans into research, discussing what to say-and what not to say-in consent forms and institutional review board applications, tools for data de-identification and how to think about the risks of re-identification, and what to consider when selecting a data repository. Turning to data that have already been collected, I discuss the ethical and regulatory issues raised by sharing data when the consent form either was silent about data sharing or explicitly promised participants that the data would not be shared. Finally, I discuss ethical issues in sharing "public" data.