From FAIR data to fair data use: Methodological data fairness in health-related social media research
From FAIR data to fair data use: Methodological data fairness in health-related social media research
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DOI：
10.1177/20539517211010310
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发表时间：
2021-01-01
影响因子：
8.5
通讯作者：
Williams, Hywel
中科院分区：
文献类型：
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作者：
Leonelli, Sabina;Lovell, Rebecca;Williams, Hywel
该论文对使用社交媒体数据（例如来自 Twitter 或 Instagram 的数据）进行健康相关研究的可靠性和道德提出了质疑。与许多其他领域一样，挖掘社交媒体信息的机会被誉为对福祉和疾病研究的变革。关于使用此类数据的公平性、责任和义务的考虑常常被搁置，因为只要数据是匿名的，就不会出现真正的道德或科学问题。我们首先反驳这种看法，强调在健康研究中使用社交媒体数据可能会产生有问题和不道德的结果。然后，我们提供了方法论数据公平性的概念，可以通过增强社交媒体数据对未来研究的可操作性来补充 FAIR 等数据管理原则。我们强调了方法论数据公平性在研究过程的不同阶段可以采取的形式，并确定了研究人员可以确保其实践和结果在科学上合理且对整个社会公平的实际步骤。我们的结论是，使研究数据公平和公平与对数据实践充分性的担忧密不可分。如果未能对这些问题采取行动，就会引发严重的道德、方法论和认知问题以及正在产生的知识和证据。
The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real ethical or scientific issue would arise. We first counter this perception by emphasising that the use of social media data in health research can yield problematic and unethical results. We then provide a conceptualisation of methodological data fairness that can complement data management principles such as FAIR by enhancing the actionability of social media data for future research. We highlight the forms that methodological data fairness can take at different stages of the research process and identify practical steps through which researchers can ensure that their practices and outcomes are scientifically sound as well as fair to society at large. We conclude that making research data fair as well as FAIR is inextricably linked to concerns around the adequacy of data practices. The failure to act on those concerns raises serious ethical, methodological and epistemic issues with the knowledge and evidence that are being produced.