Exploring bioethical issues in the use of f citizen science in environmental health research

公民科学(CS)对生物医学研究的加速参与引发了许多重要的生物伦理问题 随着新技术的出现，问题使公民能够收集、分析和共享数据。参与研究进程 使社区能够通过自己的研究来影响生物医学研究的方向 对科学进程的贡献，包括成为研究数据的共同创建者。到目前为止，许多生物伦理学 关于使用CS的具体问题一直未得到充分研究，机构审查委员会(IRBs)，其中许多是 第一次审查CS项目，努力解决他们的审查方法以及如何具体应用公共 规则监管框架。R01 ES027890“安全和公正的清洁剂：减少接触 在低工资的拉美裔移民社区成员中使用有毒清洁化学品“将在我们现有的基础上 以社区为基础的参与性研究过程，探索风险、自主性、慈善和 科学司参与者作为科学进程贡献者的作用中的公正。我们将系统地收集 在实施母公司项目的CS研究活动之前、期间和之后的纵向定性数据 关于共同创建环境健康研究过程中的生物伦理挑战 以学术和社区为基础的研究伙伴和参与研究的CS参与者的观点。我们也会收集 来自纽约大都会的生物医学机构审查委员会(IRBs)联盟成员的意见 他们在审查和批准CS研究活动方面的经验。我们通过以下途径收集的研究数据 该项目还将有助于该项目制定信息指导，以提高 研究人员和机构审查委员会成员和工作人员关于道德操守和有效审查 CS在更广泛的生物医学研究中的应用。这些数据将为分布式信息指导的发展提供信息 通过论文、演讲和网络研讨会，协助IRBs和研究人员设计和审查道德行为 CS研究，重点是环境健康研究。这项研究有助于NIEHS战略的主题2 计划，因为改进研究如何解决CS中的生物伦理问题将有助于了解如何最好地促进 社区在将数据转化为知识和行动方面的有效外联、沟通和参与。

The accelerated participation of citizen science (CS) in biomedical research has raised many important bioethical questions as new technologies empower citizens to collect, analyze and share data. Participation in the research process allows communities to acquire the ability to influence the direction of biomedical research by making their own contributions to the scientific process including becoming co-creators of research data. To date, many of the bioethical questions specific to use of CS have been understudied and Institutional Review Boards (IRBs), many of which are reviewing CS projects for the first time, struggle with their review approach and how specifically to apply the Common Rule regulatory framework. This supplemental project to R01 ES027890 “Safe and Just Cleaners: Reducing Exposure to Toxic Cleaning Chemical Products Among Low Wage Immigrant Latino Community Members” will build on our current community based participatory research process to explore the bioethical issues of risk, autonomy, beneficence, and justice in the roles of the CS participants as contributors to the scientific process. We will systematically gather longitudinal qualitative data before, during and following implementation of CS research activities of our parent project about the bioethical challenges during the process of co-creation of environmental health research both from the perspective of the academic and community-based research partners and the engaged CS participants. We will also collect input from members of a consortium of biomedical institutional review boards (IRBs) in the New York City metropolitan area regarding their experience reviewing and approving CS research activities. The research data we collect through this project will also contribute to the project’s development of informational guidance to improve capacity for researchers and Institutional Review Board members and staff regarding the ethical conduct and efficient review of CS in biomedical research more broadly. This data will inform the development of informational guidance distributed through papers, presentations and a webinar to assist IRBs and researchers in designing and reviewing the ethical conduct of CS research, with a focus on environmental health research. This research contributes to theme 2 of NIEHS strategic plan, since improving how research addresses the bioethical concerns in CS will help inform how to best promote effective outreach, communication and engagement of communities in translating data to knowledge and to action.