‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV
This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2024-04-01
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| Series: | Research Ethics Review |
| Online Access: | https://doi.org/10.1177/17470161231207739 |
| _version_ | 1797209727640272896 |
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| author | Sylvia Nabukenya David Kyaddondo Adelline Twimukye Ian Guyton Munabi Catriona Waitt Erisa S Mwaka |
| author_facet | Sylvia Nabukenya David Kyaddondo Adelline Twimukye Ian Guyton Munabi Catriona Waitt Erisa S Mwaka |
| author_sort | Sylvia Nabukenya |
| collection | DOAJ |
| description | This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five prominent themes: (i) defining the nature of research results to return to participants; (ii) preparing research participants to receive their results; (iii) obtaining informed consent for the return of results; (iv) opinions on health personnel to return the results to participants; and (v) opinions on how research results should be communicated to participants. Respondents identified various strategies for the return of individual results with minimal ethical risks including the setting up of a diverse and independent committee to undertake a risk-benefit assessment based on local context; ongoing discussions about the possible kinds of results and their implications throughout the study; and employing genetic counsellors to communicate results to participants. The strategies identified in this study should be further studied and independently verified. |
| first_indexed | 2024-04-24T09:59:18Z |
| format | Article |
| id | doaj.art-f27851ec4d074f6783f89f709cebfd10 |
| institution | Directory Open Access Journal |
| issn | 1747-0161 2047-6094 |
| language | English |
| last_indexed | 2024-04-24T09:59:18Z |
| publishDate | 2024-04-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Research Ethics Review |
| spelling | doaj.art-f27851ec4d074f6783f89f709cebfd102024-04-14T01:03:42ZengSAGE PublishingResearch Ethics Review1747-01612047-60942024-04-012010.1177/17470161231207739‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIVSylvia NabukenyaDavid KyaddondoAdelline TwimukyeIan Guyton MunabiCatriona WaittErisa S MwakaThis study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five prominent themes: (i) defining the nature of research results to return to participants; (ii) preparing research participants to receive their results; (iii) obtaining informed consent for the return of results; (iv) opinions on health personnel to return the results to participants; and (v) opinions on how research results should be communicated to participants. Respondents identified various strategies for the return of individual results with minimal ethical risks including the setting up of a diverse and independent committee to undertake a risk-benefit assessment based on local context; ongoing discussions about the possible kinds of results and their implications throughout the study; and employing genetic counsellors to communicate results to participants. The strategies identified in this study should be further studied and independently verified.https://doi.org/10.1177/17470161231207739 |
| spellingShingle | Sylvia Nabukenya David Kyaddondo Adelline Twimukye Ian Guyton Munabi Catriona Waitt Erisa S Mwaka ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV Research Ethics Review |
| title | ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV |
| title_full | ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV |
| title_fullStr | ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV |
| title_full_unstemmed | ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV |
| title_short | ‘. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV |
| title_sort | stakeholders perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with hiv |
| url | https://doi.org/10.1177/17470161231207739 |
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