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

探索在环境健康研究中使用公民科学的生物伦理问题

• 批准号: 10366264
• 负责人: Sherry L Baron
• 金额: $ 9.63万
• 依托单位: QUEENS COLLEGE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-01 至 2022-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10366264
• 关键词: Address; Area; Beneficence; Benefits and Risks; Bioethical Issues; Bioethics; Biomedical Research; Chemicals; Chronic; Communication; Communities; Data; Development; Education; Environmental Health; Ethical Review; Ethics; Exposure to; Goals; Group Interviews; Guidelines; Household; Immigrant; Impairment; Individual; Institution; Institutional Review Boards; Justice; Latino; Leadership; Lung diseases; Manuscripts; National Institute of Environmental Health Sciences; New Jersey; New York; New York City; Paper; Participant; Peer Review; Perception; Population; Process; Reflex action; Research; Research Activity; Research Personnel; Research Project Grants; Research Subjects; Resources; Risk; Role; Sample Size; Science; Strategic Planning; Time; Translating; Wages; base; citizen science; common rule; community based participatory research; community based research; community engagement; data sharing; data to knowledge; design; environmental justice; experience; improved; member; metropolitan; new technology; outreach; parent project; respiratory; risk perception; sound; tool; webinar

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.

公民科学（CS）在生物医学研究中的加速参与引发了许多重要的生命伦理学问题。 新技术使公民能够收集、分析和共享数据。参与研究过程 允许社区获得影响生物医学研究方向的能力， 对科学过程的贡献，包括成为研究数据的共同创造者。到目前为止，许多生物伦理学 与CS使用相关的具体问题已经得到充分研究，机构审查委员会（IRB），其中许多是 第一次审查CS项目，与他们的审查方法以及如何具体应用通用 规则监管框架。R01 ES 027890“安全和公正的清洁剂：减少暴露于 有毒清洁化学产品在低工资移民拉丁裔社区成员”将建立在我们目前的 以社区为基础的参与性研究过程，探讨风险、自主、有益和 在CS参与者作为科学过程的贡献者的角色中的正义。我们将系统地收集 在我们的母项目CS研究活动实施之前，期间和之后的纵向定性数据 关于共同创造环境健康研究过程中的生物伦理挑战， 学术和社区为基础的研究伙伴和从事CS参与者的角度。我们还将收集 来自纽约市大都市生物医学机构审查委员会（IRB）联盟成员的意见 关于他们审查和批准CS研究活动的经验。我们收集的研究数据 该项目还将有助于该项目制定信息指南，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行为和有效审查 CS在生物医学研究中的应用更为广泛。这些数据将为分布式信息指导的开发提供信息。 通过论文、演讲和网络研讨会，协助IRB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。本研究有助于NIEHS战略主题2 计划，因为改善研究如何解决CS中的生物伦理问题将有助于告知如何最好地促进 有效的外联、沟通和社区参与，将数据转化为知识和行动。

项目成果

Exploring the Link Between the Hazards and Value of Work, and Overcoming Risk for Community-Based Health Interventions for Immigrant Latinx Low-Wage Workers.

• DOI: 10.1177/1049732320964262
• 发表时间: 2021-01
• 期刊: QUALITATIVE HEALTH RESEARCH
• 影响因子: 3.2
• 作者: Cuervo, Isabel;Tsui, Emma K.;Islam, Nadia S.;Harari, Homero;Baron, Sherry
• 通讯作者: Baron, Sherry

Employment Quality and Mental and Self-Reported Health Inequities among Latinx Housecleaners: The Safe and Just Cleaners Study.

• DOI: 10.3390/ijerph192315973
• 发表时间: 2022-11-30
• 期刊: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
• 作者: Baron, Sherry;Cuervo, Isabel;Winkel, Gary;Flores, Deysi;Gonzalez, Ana;Harari, Homero
• 通讯作者: Harari, Homero