Towards equitable and trustworthy genomics research
Summary: 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 limi...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2022-02-01
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| Series: | EBioMedicine |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2352396422000639 |
| _version_ | 1818330342108430336 |
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| author | Jerome Atutornu Richard Milne Alesia Costa Christine Patch Anna Middleton |
| author_facet | Jerome Atutornu Richard Milne Alesia Costa Christine Patch Anna Middleton |
| author_sort | Jerome Atutornu |
| collection | DOAJ |
| description | Summary: 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. |
| first_indexed | 2024-12-13T13:02:25Z |
| format | Article |
| id | doaj.art-ee2373bc120040059c07fcef9f95e833 |
| institution | Directory Open Access Journal |
| issn | 2352-3964 |
| language | English |
| last_indexed | 2024-12-13T13:02:25Z |
| publishDate | 2022-02-01 |
| publisher | Elsevier |
| record_format | Article |
| series | EBioMedicine |
| spelling | doaj.art-ee2373bc120040059c07fcef9f95e8332022-12-21T23:44:58ZengElsevierEBioMedicine2352-39642022-02-0176103879Towards equitable and trustworthy genomics researchJerome Atutornu0Richard Milne1Alesia Costa2Christine Patch3Anna Middleton4Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UK; Kavli CentreEngagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UK; School of Health and Sports Sciences, University of Suffolk, Ipswich, IP4 1QJEngagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UKEngagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UKEngagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UK; School of Health and Sports Sciences, University of Suffolk, Ipswich, IP4 1QJ; Corresponding author at: Engagement and Society, Wellcome Connecting Science, Wellcome Genome Campus, Cambridge CB10 1SA, UK.Summary: 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.http://www.sciencedirect.com/science/article/pii/S2352396422000639DiversityInclusionEquityJusticeGenomics research |
| spellingShingle | Jerome Atutornu Richard Milne Alesia Costa Christine Patch Anna Middleton Towards equitable and trustworthy genomics research EBioMedicine Diversity Inclusion Equity Justice 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 | Diversity Inclusion Equity Justice Genomics research |
| url | http://www.sciencedirect.com/science/article/pii/S2352396422000639 |
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