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

项目摘要 全球基因组学研究的新举措使公正包容和公平 科学的实践。为了应对这些挑战，需要明确的正义和公平框架， 超越模糊和不一致的政策和方法，并锚更大的透明度 不同利益相关者之间的谈判。此外，日益全球化和多机构化的 基因组学研究的性质要求理解多个法律的，监管和制度 生态系统，为与参与者建立公平伙伴关系和分享惠益的可能性提供条件， 社区.建立在南希弗雷泽的正义框架，重点是承认，代表， 和再分配，我们探讨了基因组学研究中公平障碍的复杂性，多层次性， 特别注意法律的和体制基础设施对研究 治理、利益共享、数据控制和所有权。这一建议建立在我们对追求的研究基础上。 精准医学研究的多样性，我们发现机构实践限制了可能性， 为基因组学研究中的公平伙伴关系创造利益和挑战， 历史上代表性不足的人口。我们力求促进对这一问题的概念性理解， 公正原则，在公平分配利益方面实现公正原则的经验可能性， 对研究机构和基础设施的实际影响。为达致这些目标，我们会： 审查研究机构和社区之间谈判协定的促进因素和障碍 围绕正义，利益和公平的基因组学研究，通过调查（a）法律的，监管，商业， （B）利益攸关方对谈判的看法和经验 2）使用一个由参与者参与的过程来开发资源，以确定 就社区和研究机构之间建立公平和公正的伙伴关系进行谈判。

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.