Challenges and Recommendations in Establishing National Human Diversity Genomic Projects

TL;DR

This paper discusses the challenges faced by countries in establishing national human diversity genomic projects and offers tailored recommendations to overcome issues related to data collection, regulation, funding, and infrastructure.

Contribution

It provides a comprehensive analysis of country-specific challenges and proposes a balanced, inclusive framework for developing national genomic databases across diverse settings.

Findings

Identifies key challenges in data collection and regulation.

Highlights the importance of tailored approaches for different countries.

Recommends strategies for inclusive and sustainable genomic projects.

Abstract

Genomic approaches have revolutionized medical research, providing valuable insights into human physiology and disease. Despite major benefits from large collections of genomes, the lack of diversity in genomic data represents a significant challenge for advancing biomedical discovery and accessible health solutions worldwide. Establishing a national genomic project is not a one-size-fits-all endeavor, as each country presents distinct challenges and opportunities. We identify challenges in the way of obtaining and publishing data from Whole Genome Sequencing (WGS) of people in various countries, discuss the progress made by some in their efforts to study their genetic diversity, and assess the most common issues. We recognize that a successful national genome database requires addressing several major issues, including the variable awareness of the recent developments in genomics among government officials, healthcare administrators, and policymakers, the absence of regulations, and ethical considerations, the challenges in securing funding, establishing legal frameworks, and building the necessary infrastructure. By assembling a diverse team of experts across 19 countries, we aim to provide a balanced approach in our recommendations to establish national projects. Our study acknowledges and addresses major intricacies and nuances specific to various settings and regions while presenting diverse opinions of scientists from both high-resource and low-resource countries contributing to a more inclusive and globally relevant framework for advancing genomic research and its applications.