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Towards equitable and trustworthy genomics research
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 diver...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8850759/ https://www.ncbi.nlm.nih.gov/pubmed/35158310 http://dx.doi.org/10.1016/j.ebiom.2022.103879 |
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author | Atutornu, Jerome Milne, Richard Costa, Alesia Patch, Christine Middleton, Anna |
author_facet | Atutornu, Jerome Milne, Richard Costa, Alesia Patch, Christine Middleton, Anna |
author_sort | Atutornu, Jerome |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8850759 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
spelling | pubmed-88507592022-02-22 Towards equitable and trustworthy genomics research Atutornu, Jerome Milne, Richard Costa, Alesia Patch, Christine Middleton, Anna EBioMedicine Review 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. Elsevier 2022-02-12 /pmc/articles/PMC8850759/ /pubmed/35158310 http://dx.doi.org/10.1016/j.ebiom.2022.103879 Text en © 2022 The Authors https://creativecommons.org/licenses/by/4.0/This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Review Atutornu, Jerome Milne, Richard Costa, Alesia Patch, Christine Middleton, Anna Towards equitable and trustworthy genomics research |
title | Towards equitable and trustworthy genomics research |
title_full | Towards equitable and trustworthy genomics research |
title_fullStr | Towards equitable and trustworthy genomics research |
title_full_unstemmed | Towards equitable and trustworthy genomics research |
title_short | Towards equitable and trustworthy genomics research |
title_sort | towards equitable and trustworthy genomics research |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8850759/ https://www.ncbi.nlm.nih.gov/pubmed/35158310 http://dx.doi.org/10.1016/j.ebiom.2022.103879 |
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