Establishing a Roadmap to Benefit in Biomedical Research through Community Determined Impact Indicators and an Action Orientated Approach to Data Equity.

Institutional inclusion strategies that involve efforts to diversify genomic data are typically couched within structures that prioritize open data sharing, and are delimited by institutional IP and government funding determined deliverables. These approaches cannot deliver equitable outcomes for indigenous communities without mechanisms in place to ensure a data equity approach that is more than nominal. The current research project seeks to understand the strategies and barriers for operationalising the indigenous data sovereignty (IDSov) and data governance (IDGov) principles embedded within frameworks such as Ngā Tikanga Paihere and Te Mata Ira within publicly funded research institutions. It also seeks to address the unique implementation challenges to be met at the interface between genomics-informed biomedical research, clinical data and community. In view of the recently proposed World Economic Forum Data Equity Framework (2024), we seek to address, ‘what does an action orientated approach to data equity in Biomedical research look like and what are the barriers to implementation’? Given the uneven distribution of risks and benefits to indigenous participants in biomedical research, our research aims to centre participants as partners in community co-led research with the goal of establishing a roadmap to benefit that is based on community determined impact indicators.