Health Equity Informative Metrics (HEIM): A Framework for Quantifying Global Biobank Research Equity

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Abstract
Background: Despite representing approximately 85% of the global population, low- and middle-income countries (LMICs) contribute less than 10% of participants to genome-wide association studies and biobank research. This disparity has profound implications for the generalisability of precision medicine. However, no standardised framework exists to quantify research equity at the biobank level or track progress over time. Methods: We developed the Health Equity Informative Metrics (HEIM) framework to quantify alignment between biobank research output and global disease burden. We analysed 75,356 PubMed-indexed publications (2000-2025) from 27 biobanks across 19 countries, mapping each to 179 disease categories from the Global Burden of Disease Study 2021. We calculated disease-specific Gap Scores measuring the mismatch between burden (disability-adjusted life years, DALYs) and research attention, biobank-level Equity Alignment Scores (EAS), and regional equity ratios comparing high-income (HIC) to LMIC research intensity. Findings: Within our 27-biobank sample, HIC biobanks produced substantially higher research output per DALY compared to LMIC biobanks (ratio: 322:1; sensitivity analyses: >100:1 across methodological variations). Regional concentration was marked: the Americas and Europe accounted for 97.8% of publications, while Africa, Eastern Mediterranean, and South-East Asia combined contributed <1%. Of 179 disease categories, 23 (13%) exhibited critical or high-severity research gaps despite substantial global burden. Only 4 of 27 biobanks (15%) achieved ‘Strong’ or ‘Moderate’ equity alignment scores; 19 (70%) were rated ‘Poor’. Six disease categories showed critical gaps, including drowning (15.7 million DALYs, 0 mapped publications) and iodine deficiency (2.3 million DALYs, 10 publications). Interpretation: The HEIM framework reveals substantial disparities in how biobank research capacity is distributed relative to global disease burden. While the precise equity ratio varies with sample selection and methodology, the fundamental pattern of profound inequity is robust across reasonable analytical choices. These findings provide baseline measurements for tracking progress toward more equitable genomic research and identify high-priority targets for intervention.

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