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Related Experiment Video

Updated: Oct 3, 2025

Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease

Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease

Published on: April 4, 2018

Towards equitable and trustworthy genomics research.

Jerome Atutornu¹, Richard Milne², Alesia Costa³

¹Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UK; School of Health and Sports Sciences, University of Suffolk, Ipswich, IP4 1QJ.

|February 14, 2022

Summary

Building trust is crucial for increasing the representation of underserved populations in genomic research. Strategies include diversifying the research workforce and engaging communities respectfully.

Keywords:

Diversity Equity Genomics research Inclusion Justice

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Area of Science:

Genomics
Health Equity
Social Justice

Background:

Representation of underserved groups in genomic research remains low.
Lack of trust and diversity in the research community are key barriers.
Equity and social justice concerns highlight the need for better representation.

Purpose of the Study:

To address the underrepresentation of specific populations in genomic research.
To propose strategies for building trust with underserved communities.
To review approaches for enhancing trustworthiness in research.

Main Methods:

Narrative review of existing literature and initiatives.
Analysis of factors contributing to low representation.
Identification of actionable strategies for improving trust and engagement.

Main Results:

Trust-building is essential for data and sample sharing.
Four key approaches to demonstrating trustworthiness are identified.
Increasing workforce diversity and meaningful community engagement are vital.

Conclusions:

Enhancing trust is paramount for equitable genomic research participation.
Culturally and linguistically appropriate engagement is necessary.
Global capacity building can prevent research exploitation and improve equity.