Native Hawaiians experience some of the highest cancer burdens in the United States, yet remain persistently underrepresented in health data, biomedical research, and genetic studies. This systemic invisibility—rooted in historical misclassification, data aggregation, and exclusion—undermines efforts to reduce cancer disparities and advance health equity. This chapter explores how the lack of disaggregated, culturally grounded data for Native Hawaiians impedes public health strategies, precision medicine, and genomic research. We argue that visibility in data is a scientific imperative: inclusion is critical not only to identify disparities but also to inform effective, community-specific interventions. Native Hawaiians offer unique genetic, environmental, and cultural insights that are essential to understanding cancer risk and treatment response. However, scientific progress is hindered without Indigenous representation in cell lines, pharmacogenomics, and genomic databases. Addressing these inequities requires investment in Native Hawaiian-led research, ethical frameworks for data sovereignty, and a robust, culturally competent Indigenous health research workforce. Community-rooted initiatives are models for reclaiming data and driving systemic change. By centering Native Hawaiian knowledge, leadership, and values in research, we can transform cancer care and advance a broader vision of justice, health, and sovereignty for Indigenous communities.

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The Science of Visibility: Why Native Hawaiian Cancer Data Matters in Research, Public Health, and Genetics

  • Maile Taualii

摘要

Native Hawaiians experience some of the highest cancer burdens in the United States, yet remain persistently underrepresented in health data, biomedical research, and genetic studies. This systemic invisibility—rooted in historical misclassification, data aggregation, and exclusion—undermines efforts to reduce cancer disparities and advance health equity. This chapter explores how the lack of disaggregated, culturally grounded data for Native Hawaiians impedes public health strategies, precision medicine, and genomic research. We argue that visibility in data is a scientific imperative: inclusion is critical not only to identify disparities but also to inform effective, community-specific interventions. Native Hawaiians offer unique genetic, environmental, and cultural insights that are essential to understanding cancer risk and treatment response. However, scientific progress is hindered without Indigenous representation in cell lines, pharmacogenomics, and genomic databases. Addressing these inequities requires investment in Native Hawaiian-led research, ethical frameworks for data sovereignty, and a robust, culturally competent Indigenous health research workforce. Community-rooted initiatives are models for reclaiming data and driving systemic change. By centering Native Hawaiian knowledge, leadership, and values in research, we can transform cancer care and advance a broader vision of justice, health, and sovereignty for Indigenous communities.