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.

项目概要 全球基因组学研究的新举措加剧了公正包容和公平问题的紧迫性 为了应对这些挑战，需要明确的正义和公平框架。 超越模棱两可和不一致的政策和方法，并提高透明度 不同利益相关者之间的谈判。 基因组学研究的性质需要了解多种法律、监管和制度 为与参与者建立公平伙伴关系和利益分享的可能性提供条件的生态系统， 以南希·弗雷泽 (Nancy Fraser) 的司法框架为基础，该框架侧重于认可、代表性、 和再分配，我们探讨了基因组学研究公平性障碍的复杂性、多层次性 特别关注法律和体制基础设施对学习等问题的影响 该提案建立在我们对追求的研究的基础上。 精准医学研究的多样性，我们发现制度实践限制了可能性 为基因组学研究中的公平伙伴关系创造利益并创造挑战，寻求参与 我们致力于促进对历史上代表性不足的人群的概念性理解。 正义的概念、其在利益公平分配中实现原则的经验可能性，以及 对研究机构和基础设施的实际影响 为了实现这些目标，我们将： 1) 检查研究机构和社区之间谈判协议的促进因素和障碍 通过调查（a）法律、监管、商业、 道德框架和政策，以及 (b) 利益相关者对谈判的看法和经验 协议；2) 使用利益相关者参与的流程来开发资源来确定要点 社区和研究机构之间就公平公正的伙伴关系进行谈判。