Don't quote me: reverse identification of research participants in social media studies
Don't quote me: reverse identification of research participants in social media studies
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DOI：
10.1038/s41746-018-0036-2
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发表时间：
2018-08-02
影响因子：
15.2
通讯作者：
Dredze, Mark
中科院分区：
文献类型：
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作者：
Ayers, John W.;Caputi, Theodore L.;Dredze, Mark
我们调查了社交媒体监测研究的参与者是否可以通过回顾2015年或2016年在PubMed上发表的所有带有“Twitter”字样的文章，并在标题或摘要中注明“已读”、“编码”或“内容”，来进行反向识别。72% （95% CI: 63-80）的文章引用了至少一个参与者的推文，搜索引用的内容导致参与者的84% （95% CI: 74-91）的时间。21% （95% CI: 13-29）的文章披露了参与者的Twitter用户名，从而使参与者立即被识别出来。只有一篇文章报告获得了披露识别信息的同意，只有40% （95% CI: 31-50）的文章提到了机构审查委员会（IRB）的参与，其中17% （95% CI: 10-25）获得了IRB的批准，23% （95% CI: 16-32）被认为是豁免的。生物医学出版物通常通过引用推文或透露用户名来包含可识别信息，这反过来违反了ICMJE管理科学伦理的伦理标准，即使这些内容在科学上是不必要的。我们建议作者在不透露参与者身份的情况下传达总体研究结果，编辑拒绝发表透露参与者身份的报告，irb在审查涉及社交媒体数据的研究时关注这些隐私问题。这些战略将共同确保参与者今后受到保护。
We investigated if participants in social media surveillance studies could be reverse identified by reviewing all articles published on PubMed in 2015 or 2016 with the words "Twitter" and either "read," "coded," or "content" in the title or abstract. Seventy-two percent (95% CI: 63-80) of articles quoted at least one participant's tweet and searching for the quoted content led to the participant 84% (95% CI: 74-91) of the time. Twenty-one percent (95% CI: 13-29) of articles disclosed a participant's Twitter username thereby making the participant immediately identifiable. Only one article reported obtaining consent to disclose identifying information and institutional review board (IRB) involvement was mentioned in only 40% (95% CI: 31-50) of articles, of which 17% (95% CI: 10-25) received IRB-approval and 23% (95% CI: 16-32) were deemed exempt. Biomedical publications are routinely including identifiable information by quoting tweets or revealing usernames which, in turn, violates ICMJE ethical standards governing scientific ethics, even though said content is scientifically unnecessary. We propose that authors convey aggregate findings without revealing participants' identities, editors refuse to publish reports that reveal a participant's identity, and IRBs attend to these privacy issues when reviewing studies involving social media data. These strategies together will ensure participants are protected going forward.