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

NIH RePORTER · NIH · R01 · $737,573 · view on reporter.nih.gov ↗

Abstract

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.

Key facts

NIH application ID
10910148
Project number
5R01HG012841-02
Recipient
COLUMBIA UNIVERSITY HEALTH SCIENCES
Principal Investigator
Shawneequa Callier
Activity code
R01
Funding institute
NIH
Fiscal year
2024
Award amount
$737,573
Award type
5
Project period
2023-09-01 → 2027-06-30