Just Inclusion and Equity: Negotiating Community-Research Partnerships in Genomics Research (JUSTICE)

公正包容和公平：谈判基因组学研究中的社区研究伙伴关系 (JUSTICE)

• 批准号: 10743563
• 负责人: Shawneequa Callier
• 金额: $ 81.75万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2027-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10743563
• 关键词: Accountability; Address; Agreement; Area; Attention; Authorization documentation; Beneficence; Biomedical Research; Communities; Complex; Data; Decision Making; Ecosystem; Equity; Ethics; Genomics; Human; Individual; Inequity; Infrastructure; Institution; Institutional Practice; Institutionalization; Interview; Justice; Laws; Legal; Life Cycle Stages; Literature; Maps; Mediation; Nature; Ownership; Participant; Pattern; Persons; Phase; Policies; Privacy; Process; Recording of previous events; Reporting; Research; Research Personnel; Research Project Grants; Resources; STEM research; Science; Shapes; Sorting; Structure; System; Trust; Underrepresented Populations; adjudication; authority; benefit sharing; community based participatory research; community involvement; ethical, legal, and social implication; evidence base; experience; innovation; interest; precision medicine; recruit; social; stakeholder perspectives; theories; trustworthiness

PROJECT SUMMARY New initiatives in global genomics research escalate the urgency of questions of just inclusion and equitable practice of science. To address these challenges, explicit framings of justice and equity are required to move beyond ambiguous and inconsistent policies and approaches, and anchor greater transparency in negotiations between different stakeholders. Additionally, the increasingly global and multi-institutional nature of genomics research requires understanding of the multiple legal, regulatory, and institutional ecosystems that condition the possibilities for equitable partnership and benefit-sharing with participants and communities. Building on Nancy Fraser’s framework of justice that focuses on recognition, representation, and redistribution, we explore the complex, multi-level nature of barriers to equity in genomics research with particular attention to the influence of legal and institutional infrastructures on issues such as study governance, benefit sharing, data control, and ownership. This proposal builds on our research of the pursuit of diversity in precision medicine research, where we found that institutional practices constrain possibilities for benefits and create challenges for equitable partnerships in genomics research seeking to engage historically underrepresented populations. We seek to contribute to a conceptual understanding of the principle of justice, empirical possibilities for its realization in the equitable distribution of benefits, and practical implications for research institutions and infrastructure. To achieve these objectives, we will: 1) examine facilitators and barriers to negotiating agreements between research institutions and communities around justice, benefit, and equity in genomics research by investigating (a) legal, regulatory, commercial, and ethical frameworks and policies, and (b) stakeholder perspectives on and experiences with negotiations of agreements; and 2) use a stakeholder-engaged process to develop resources to identify points of negotiation for equitable and just partnerships between communities and research institutions.

项目摘要 全球基因组学研究的新计划升级了仅包含和公平的问题的紧迫性 科学实践。为了应对这些挑战，需要明确的正义和公平框架 除了模棱两可和不一致的政策和方法之外，并确立了更高的透明度 不同利益相关者之间的谈判。此外，越来越全球和多机构 基因组学研究的性质需要了解多个法律，监管和机构 与参与者以及 社区。建立在南希·弗雷泽（Nancy Fraser）的正义框架的基础上 和重新分配，我们探索了基因组学研究中公平障碍的复杂，多层次的性质 特别关注法律和机构基础设施对诸如研究等问题的影响 治理，福利共享，数据控制和所有权。这项建议是基于我们对追求的研究 精确医学研究中的多样性，我们发现机构实践可能会限制 利益并为寻求参与的基因组学研究中的公平伙伴关系构成挑战 历史上人口不足。我们试图为对人的概念理解做出贡献 司法原则，实现在公平分配利益方面的经验可能性，以及 对研究机构和基础设施的实际意义。为了实现这些目标，我们将：1） 研究研究机构与社区之间谈判协议的促进者和障碍 通过调查（a）法律，监管，商业， 以及道德框架和政策，以及（b）利益相关者对谈判的观点和经验 协议； 2）使用利益相关者参与过程来开发资源来识别 关于社区和研究机构之间公平和仅合作的谈判。