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Feeding back of individual genetic results in Botswana: mapping opportunities and challenges

PURPOSE: We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether...

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Autores principales: Kasule, Mary, Matshaba, Mogomotsi, Wonkam, Ambroise, de Vries, Jantina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10239568/
https://www.ncbi.nlm.nih.gov/pubmed/37270597
http://dx.doi.org/10.1186/s12910-023-00912-1
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author Kasule, Mary
Matshaba, Mogomotsi
Wonkam, Ambroise
de Vries, Jantina
author_facet Kasule, Mary
Matshaba, Mogomotsi
Wonkam, Ambroise
de Vries, Jantina
author_sort Kasule, Mary
collection PubMed
description PURPOSE: We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. METHODS: Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of African genomics research. Coded data was analyzed through an iterative process of analytic induction to document and interpret themes. RESULTS: Overall, respondents were of the view that feedback of actionable individual genomic results was an important outcome that could benefit participants. However, a number of themes surfaced that pointed to opportunities and challenges that exist in Botswana that could help in planning for feeding back of individual genomic results that were mapped. Some of the opportunities cited by the respondents included the existence of good governance; democracy and humanitarianism; universal healthcare system; national commitment to science; research and innovation to transform Botswana into a knowledge-based economy; and applicable standard of care which could promote actionability. On the other hand, contextual issues like the requirement for validation of genomic research results in accredited laboratories, high cost of validation of genomic results, and linkage to care, as well as lack of experts like genomic scientists and counselors were considered as challenges for return of individual results. CONCLUSION: We propose that decisions whether and which genomic results to return take into consideration contextual opportunities and challenges for actionability for return of results in a research setting. This is likely to avoid or minimize ethical issues of justice, equity and harm regarding actionability decisions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00912-1.
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spelling pubmed-102395682023-06-05 Feeding back of individual genetic results in Botswana: mapping opportunities and challenges Kasule, Mary Matshaba, Mogomotsi Wonkam, Ambroise de Vries, Jantina BMC Med Ethics Research PURPOSE: We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. METHODS: Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of African genomics research. Coded data was analyzed through an iterative process of analytic induction to document and interpret themes. RESULTS: Overall, respondents were of the view that feedback of actionable individual genomic results was an important outcome that could benefit participants. However, a number of themes surfaced that pointed to opportunities and challenges that exist in Botswana that could help in planning for feeding back of individual genomic results that were mapped. Some of the opportunities cited by the respondents included the existence of good governance; democracy and humanitarianism; universal healthcare system; national commitment to science; research and innovation to transform Botswana into a knowledge-based economy; and applicable standard of care which could promote actionability. On the other hand, contextual issues like the requirement for validation of genomic research results in accredited laboratories, high cost of validation of genomic results, and linkage to care, as well as lack of experts like genomic scientists and counselors were considered as challenges for return of individual results. CONCLUSION: We propose that decisions whether and which genomic results to return take into consideration contextual opportunities and challenges for actionability for return of results in a research setting. This is likely to avoid or minimize ethical issues of justice, equity and harm regarding actionability decisions. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12910-023-00912-1. BioMed Central 2023-06-03 /pmc/articles/PMC10239568/ /pubmed/37270597 http://dx.doi.org/10.1186/s12910-023-00912-1 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Kasule, Mary
Matshaba, Mogomotsi
Wonkam, Ambroise
de Vries, Jantina
Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title_full Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title_fullStr Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title_full_unstemmed Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title_short Feeding back of individual genetic results in Botswana: mapping opportunities and challenges
title_sort feeding back of individual genetic results in botswana: mapping opportunities and challenges
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10239568/
https://www.ncbi.nlm.nih.gov/pubmed/37270597
http://dx.doi.org/10.1186/s12910-023-00912-1
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