4.7 Review

Towards equitable and trustworthy genomics research

Journal

EBIOMEDICINE
Volume 76, Issue -, Pages -

Publisher

ELSEVIER
DOI: 10.1016/j.ebiom.2022.103879

Keywords

Diversity; Inclusion; Equity; Justice; Genomics research

Funding

  1. Wellcome grant [108413/A/15/D]
  2. Wellcome Trust [108413/A/15/D] Funding Source: Wellcome Trust

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Despite concerns about equity and social justice, the representation of traditionally scientifically underserved groups in genomic research remains low. Factors contributing to this include a lack of trust in the research community and limited diversity in this community. Building trust requires increasing diversity among researchers and engaging meaningfully with underrepresented communities in a culturally and linguistically appropriate manner.
The representation of traditionally scientifically underserved groups in genomic research continues to be low despite concerns about equity and social justice and the scientific and clinical need. Among the factors that account for this are a lack of trust in the research community and limited diversity in this community. The success of the multiple initiatives that aim to improve representation relies on the willingness of underrepresented populations to make data and samples available for research and clinical use. In this narrative review, we propose that this requires building trust, and set out four approaches to demonstrating trustworthiness, including increasing diversity in the research workforce, and meaningful engagement with underrepresented communities in a culturally and linguistically appropriate manner. Capacity building globally will ensure that actual and perceived exploitation and 'helicopter' research could be eliminated. Copyright (C) 2022 The Authors. Published by Elsevier B.V.

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