No person left behind: Mapping the health policy landscape for genomics research in the Caribbean
Summary: The Caribbean has long been an under-represented geographical region in the field of genomics research. Such under-representation may result in Caribbean people being underserved by precision medicine and other public health benefits of genomics. A collaboration among regional and internati...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2022-11-01
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| Series: | The Lancet Regional Health. Americas |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2667193X22001843 |
| _version_ | 1797994973447061504 |
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| author | Jyothsna Bolleddula Donald Simeon Simon G. Anderson Lester Shields Jasneth Mullings Pilar Ossorio Averell Bethelmey Anna Kasafi Perkins |
| author_facet | Jyothsna Bolleddula Donald Simeon Simon G. Anderson Lester Shields Jasneth Mullings Pilar Ossorio Averell Bethelmey Anna Kasafi Perkins |
| author_sort | Jyothsna Bolleddula |
| collection | DOAJ |
| description | Summary: The Caribbean has long been an under-represented geographical region in the field of genomics research. Such under-representation may result in Caribbean people being underserved by precision medicine and other public health benefits of genomics. A collaboration among regional and international researchers aims to address this issue through the H3ECaribbean project (Human Heredity, Environment, and Health in the Caribbean), which builds on the lessons and success of H3Africa. The Caribbean project aims to target issues of social justice by encouraging the inclusion of diverse Caribbean communities in genomics research. This paper explores a framework for the ethical and socially acceptable conduct of genomics research in the Caribbean, taking account of the cultural peculiarities of the region. This is done in part by exploring research ethics issues identified in indigenous communities in North America, Small Island Developing States, and similar endeavours from the African continent. The framework provides guidance for interacting with local community leaders, as well as detailing steps for obtaining informed consent of all participants. Specifically, the authors outline the methods to ensure effective interaction and enforce full transparency with study participants to combat historical neglect when working with under-represented communities in the Caribbean. |
| first_indexed | 2024-04-11T09:54:08Z |
| format | Article |
| id | doaj.art-7e057a31214049e085ca85fac1f0b561 |
| institution | Directory Open Access Journal |
| issn | 2667-193X |
| language | English |
| last_indexed | 2024-04-11T09:54:08Z |
| publishDate | 2022-11-01 |
| publisher | Elsevier |
| record_format | Article |
| series | The Lancet Regional Health. Americas |
| spelling | doaj.art-7e057a31214049e085ca85fac1f0b5612022-12-22T04:30:42ZengElsevierThe Lancet Regional Health. Americas2667-193X2022-11-0115100367No person left behind: Mapping the health policy landscape for genomics research in the CaribbeanJyothsna Bolleddula0Donald Simeon1Simon G. Anderson2Lester Shields3Jasneth Mullings4Pilar Ossorio5Averell Bethelmey6Anna Kasafi Perkins7Cornell University, Ithaca, NY, USAThe University of the West Indies, St Augustine, Trinidad and TobagoGlasgow Caribbean Centre for Development Research, The University of the West Indies, Cave Hill, BarbadosThe University of the West Indies, Mona, JamaicaThe University of the West Indies, Mona, JamaicaUniversity of Wisconsin, Madison, WI, USAThe University of the West Indies, St Augustine, Trinidad and TobagoThe University of the West Indies, Regional Headquarters, Jamaica; Corresponding author.Summary: The Caribbean has long been an under-represented geographical region in the field of genomics research. Such under-representation may result in Caribbean people being underserved by precision medicine and other public health benefits of genomics. A collaboration among regional and international researchers aims to address this issue through the H3ECaribbean project (Human Heredity, Environment, and Health in the Caribbean), which builds on the lessons and success of H3Africa. The Caribbean project aims to target issues of social justice by encouraging the inclusion of diverse Caribbean communities in genomics research. This paper explores a framework for the ethical and socially acceptable conduct of genomics research in the Caribbean, taking account of the cultural peculiarities of the region. This is done in part by exploring research ethics issues identified in indigenous communities in North America, Small Island Developing States, and similar endeavours from the African continent. The framework provides guidance for interacting with local community leaders, as well as detailing steps for obtaining informed consent of all participants. Specifically, the authors outline the methods to ensure effective interaction and enforce full transparency with study participants to combat historical neglect when working with under-represented communities in the Caribbean.http://www.sciencedirect.com/science/article/pii/S2667193X22001843CaribbeanGenomicsSocialLegalEthicalELSI |
| spellingShingle | Jyothsna Bolleddula Donald Simeon Simon G. Anderson Lester Shields Jasneth Mullings Pilar Ossorio Averell Bethelmey Anna Kasafi Perkins No person left behind: Mapping the health policy landscape for genomics research in the Caribbean The Lancet Regional Health. Americas Caribbean Genomics Social Legal Ethical ELSI |
| title | No person left behind: Mapping the health policy landscape for genomics research in the Caribbean |
| title_full | No person left behind: Mapping the health policy landscape for genomics research in the Caribbean |
| title_fullStr | No person left behind: Mapping the health policy landscape for genomics research in the Caribbean |
| title_full_unstemmed | No person left behind: Mapping the health policy landscape for genomics research in the Caribbean |
| title_short | No person left behind: Mapping the health policy landscape for genomics research in the Caribbean |
| title_sort | no person left behind mapping the health policy landscape for genomics research in the caribbean |
| topic | Caribbean Genomics Social Legal Ethical ELSI |
| url | http://www.sciencedirect.com/science/article/pii/S2667193X22001843 |
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