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

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.

This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal and organizational infrastructures and practices that shape how decisions are made, by whom, and with what consequences, and changes that can support innovative and transformative approaches to equity, benefit and justice.