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Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or g...

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Autores principales: Mwaka, Erisa Sabakaki, Sebatta, Deborah Ekusai, Ochieng, Joseph, Munabi, Ian Guyton, Bagenda, Godfrey, Ainembabazi, Deborah, Kaawa-Mafigiri, David
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Routledge 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952062/
https://www.ncbi.nlm.nih.gov/pubmed/33762814
http://dx.doi.org/10.1080/11287462.2021.1896453
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author Mwaka, Erisa Sabakaki
Sebatta, Deborah Ekusai
Ochieng, Joseph
Munabi, Ian Guyton
Bagenda, Godfrey
Ainembabazi, Deborah
Kaawa-Mafigiri, David
author_facet Mwaka, Erisa Sabakaki
Sebatta, Deborah Ekusai
Ochieng, Joseph
Munabi, Ian Guyton
Bagenda, Godfrey
Ainembabazi, Deborah
Kaawa-Mafigiri, David
author_sort Mwaka, Erisa Sabakaki
collection PubMed
description Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.
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spelling pubmed-79520622021-03-23 Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study Mwaka, Erisa Sabakaki Sebatta, Deborah Ekusai Ochieng, Joseph Munabi, Ian Guyton Bagenda, Godfrey Ainembabazi, Deborah Kaawa-Mafigiri, David Glob Bioeth Research Articles Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling. Routledge 2021-03-09 /pmc/articles/PMC7952062/ /pubmed/33762814 http://dx.doi.org/10.1080/11287462.2021.1896453 Text en © 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Articles
Mwaka, Erisa Sabakaki
Sebatta, Deborah Ekusai
Ochieng, Joseph
Munabi, Ian Guyton
Bagenda, Godfrey
Ainembabazi, Deborah
Kaawa-Mafigiri, David
Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title_full Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title_fullStr Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title_full_unstemmed Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title_short Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
title_sort researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952062/
https://www.ncbi.nlm.nih.gov/pubmed/33762814
http://dx.doi.org/10.1080/11287462.2021.1896453
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