Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review.
Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review.
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DOI：
10.3389/fdgth.2020.592237
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发表时间：
2020
影响因子：
--
通讯作者：
Hassan L
中科院分区：
文献类型：
--
作者：
Ford E;Shepherd S;Jones K;Hassan L
背景：文本挖掘技术一直在发展，社交媒体文本的庞大语料库可以分析用户与健康相关的观点和体验。对于药物副作用和疾病传播等健康问题，以及患者对健康状况和卫生保健的体验，有很大希望获得新的见解。然而，这一新兴领域缺乏伦理共识和指导。我们的目标是汇集这一领域的综合意见、观点和建议，以便新进入该领域的学术研究人员能够理解相关的伦理问题。方法：在PROSPERO注册协议后，进行了三次平行系统搜索，以确定包含评论、观点和建议的学术文章，这些评论、意见和建议涉及健康研究的社交媒体文本挖掘中的伦理实践，以及灰色文献指南和建议。这些数据与定性研究中社交媒体用户的观点相结合。对符合纳入标准的论文和报告进行主题分析，以确定关键主题，并推断出一套总体主题。结果：共审阅了47篇报告和文章，确定了8个主题。评论人士建议，只要确保用户的匿名性，公开发布的社交媒体数据可以在未经同意和正式的研究伦理批准的情况下使用，尽管我们注意到用户在某些网站上难以浏览隐私设置。即使不需要正式批准，我们也注意到伦理问题：积极识别并尽量减少可能的危害，为公共利益而不是私人利益进行研究，确保数据访问和分析方法的透明度和质量，遵守法律和社交媒体网站的条款和条件。结论：尽管社交媒体文本挖掘通常可以在没有正式伦理批准的情况下合法合理地进行，但我们建议通过增加研究目的、数据访问和分析方法的透明度来提高健康相关研究的伦理标准；与社交媒体用户和目标群体协商，以确定和减轻可能出现的潜在危害；并确保社交媒体用户的匿名性。
Background: Text-mining techniques are advancing all the time and vast corpora of social media text can be analyzed for users' views and experiences related to their health. There is great promise for new insights into health issues such as drug side effects and spread of disease, as well as patient experiences of health conditions and health care. However, this emerging field lacks ethical consensus and guidance. We aimed to bring together a comprehensive body of opinion, views, and recommendations in this area so that academic researchers new to the field can understand relevant ethical issues. Methods: After registration of a protocol in PROSPERO, three parallel systematic searches were conducted, to identify academic articles comprising commentaries, opinion, and recommendations on ethical practice in social media text mining for health research and gray literature guidelines and recommendations. These were integrated with social media users' views from qualitative studies. Papers and reports that met the inclusion criteria were analyzed thematically to identify key themes, and an overarching set of themes was deduced. Results: A total of 47 reports and articles were reviewed, and eight themes were identified. Commentators suggested that publicly posted social media data could be used without consent and formal research ethics approval, provided that the anonymity of users is ensured, although we note that privacy settings are difficult for users to navigate on some sites. Even without the need for formal approvals, we note ethical issues: to actively identify and minimize possible harms, to conduct research for public benefit rather than private gain, to ensure transparency and quality of data access and analysis methods, and to abide by the law and terms and conditions of social media sites. Conclusion: Although social media text mining can often legally and reasonably proceed without formal ethics approvals, we recommend improving ethical standards in health-related research by increasing transparency of the purpose of research, data access, and analysis methods; consultation with social media users and target groups to identify and mitigate against potential harms that could arise; and ensuring the anonymity of social media users.
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影响因子：
2.7
作者：
Aitken M;de St Jorre J;Pagliari C;Jepson R;Cunningham-Burley S
通讯作者：
Cunningham-Burley S
影响因子：
3.2
作者：
Cooke, Alison;Smith, Debbie;Booth, Andrew
通讯作者：
Booth, Andrew
影响因子：
4.2
作者：
Boyd, Danah;Crawford, Kate
通讯作者：
Crawford, Kate
影响因子：
7.4
作者：
Brady E;Segar J;Sanders C
通讯作者：
Sanders C
DOI：
10.3390/ijerph7020596
发表时间：
2010-02
影响因子：
--
作者：
Corley CD;Cook DJ;Mikler AR;Singh KP
通讯作者：
Singh KP