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Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study

This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews w...

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Autores principales: Nabukenya, Sylvia, Ochieng, Joseph, Kaawa-Mafigiri, David, Munabi, Ian, Nakigudde, Janet, Nakwagala, Frederick Nelson, Barugahare, John, Kwagala, Betty, Ibingira, Charles, Twimwijukye, Adelline, Sewankambo, Nelson, Mwaka, Erisa Sabakaki
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9536131/
https://www.ncbi.nlm.nih.gov/pubmed/36213304
http://dx.doi.org/10.1177/17470161221076974
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author Nabukenya, Sylvia
Ochieng, Joseph
Kaawa-Mafigiri, David
Munabi, Ian
Nakigudde, Janet
Nakwagala, Frederick Nelson
Barugahare, John
Kwagala, Betty
Ibingira, Charles
Twimwijukye, Adelline
Sewankambo, Nelson
Mwaka, Erisa Sabakaki
author_facet Nabukenya, Sylvia
Ochieng, Joseph
Kaawa-Mafigiri, David
Munabi, Ian
Nakigudde, Janet
Nakwagala, Frederick Nelson
Barugahare, John
Kwagala, Betty
Ibingira, Charles
Twimwijukye, Adelline
Sewankambo, Nelson
Mwaka, Erisa Sabakaki
author_sort Nabukenya, Sylvia
collection PubMed
description This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.
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spelling pubmed-95361312022-10-06 Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study Nabukenya, Sylvia Ochieng, Joseph Kaawa-Mafigiri, David Munabi, Ian Nakigudde, Janet Nakwagala, Frederick Nelson Barugahare, John Kwagala, Betty Ibingira, Charles Twimwijukye, Adelline Sewankambo, Nelson Mwaka, Erisa Sabakaki Res Ethics Article This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified. 2022-07 2022-02-07 /pmc/articles/PMC9536131/ /pubmed/36213304 http://dx.doi.org/10.1177/17470161221076974 Text en Article reuse guidelines: sagepub.com/journals-permissions (http://sagepub.com/journals-permissions) https://creativecommons.org/licenses/by-nc/4.0/Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Article
Nabukenya, Sylvia
Ochieng, Joseph
Kaawa-Mafigiri, David
Munabi, Ian
Nakigudde, Janet
Nakwagala, Frederick Nelson
Barugahare, John
Kwagala, Betty
Ibingira, Charles
Twimwijukye, Adelline
Sewankambo, Nelson
Mwaka, Erisa Sabakaki
Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title_full Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title_fullStr Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title_full_unstemmed Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title_short Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study
title_sort experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with hiv: a qualitative study
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9536131/
https://www.ncbi.nlm.nih.gov/pubmed/36213304
http://dx.doi.org/10.1177/17470161221076974
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