Approaches to governance of participant-led research: a qualitative case study
Approaches to governance of participant-led research: a qualitative case study
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DOI：
10.1136/bmjopen-2018-025633
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发表时间：
2019-06-01
期刊：
影响因子：
2.9
通讯作者：
Nebeker, Camille
中科院分区：
文献类型：
--
作者：
Grant, Azure Dominique;Wolf, Gary Isaac;Nebeker, Camille
研究目的：研究者主导的研究（PLR）是一种快速发展的公民科学形式，在这种形式中，个人可以创造个人的和可概括的知识。虽然公共关系研究缺乏一个正式的伦理审查框架，但参与者不应被免除考虑其工作的伦理影响。因此，一个PLR队列由24个自我跟踪的目的是：（1）替代研究伦理委员会的程序与伦理反思之前和整个研究和（2）草案的原则，鼓励进一步发展的治理和伦理审查PLR.Methods定性案例研究方法被用来分析伦理反思过程。参与者讨论了研究风险，风险管理策略和项目前的好处，在一系列每周的网络研讨会上，通过与参与者组织者的单独会议，以及在项目完成时的半结构化访谈。从讨论和访谈中产生的主题被用来起草前瞻性的原则，以指导PLR.Results数据控制，汇总和可识别性是最常见的风险。解决这些问题的办法是承诺在所有参与者之间保持透明度，并通过自行收集和自行管理数据建立参与者控制。小组讨论和资源（例如，协助实验设计和数据分析）是最常提及的参与益处。其他好处包括更好地了解一个人的生理和更大的能力，以结构的实验。制定了九项原则，以鼓励进一步发展道德PLR实践。所有与会者表示有兴趣参加未来PLR.Conclusions参与少数参与者的项目可以维持参与者和参与组织者之间的道德反思。PLR优先考虑透明度、参与者对数据的控制和持续的风险-收益评估，符合健康研究传统伦理审查的原则，同时适合公民科学家发挥核心作用的背景。
Objectives Participant-led research (PLR) is a rapidly developing form of citizen science in which individuals can create personal and generalisable knowledge. Although PLR lacks a formal framework for ethical review, participants should not be excused from considering the ethical implications of their work. Therefore, a PLR cohort consisting of 24 self-trackers aimed to: (1) substitute research ethics board procedures with engagement in ethical reflection before and throughout the study and (2) draft principles to encourage further development of the governance and ethical review of PLR.Methods A qualitative case study method was used to analyse the ethical reflection process. Participants discussed study risks, risk management strategies and benefits pre-project, during a series of weekly webinars, via individual meetings with the participant-organisers, and during semi-structured interviews at project completion. Themes arising from discussions and interviews were used to draft prospective principles to guide PLR.Results Data control, aggregation and identifiability were the most common risks identified. These were addressed by a commitment to transparency among all participants and by establishing participant control via self-collection and self-management of data. Group discussions and resources (eg, assistance with experimental design and data analysis) were the most commonly referenced benefits of participation. Additional benefits included greater understanding of one's physiology and greater ability to structure an experiment. Nine principles were constructed to encourage further development of ethical PLR practices. All participants expressed interest in participating in future PLR.Conclusions Projects involving a small number of participants can sustain engagement in ethical reflection among participants and participant-organisers. PLR that prioritises transparency, participant control of data and ongoing risk-to-benefit evaluation is compatible with the principles that underlie traditional ethical review of health research, while being appropriate for a context in which citizen scientists play the central role.