Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada
Abstract Background This study explored the ethical issues associated with community-based HIV testing among African, Caribbean, and Black (ACB) populations in Canada, focusing on their perceptions of consent, privacy, and the management of HIV-related data and bio-samples. Methods A qualitative com...
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2025-01-01
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| Online Access: | https://doi.org/10.1186/s12910-025-01161-0 |
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| author | Rusty Souleymanov Bolaji Akinyele-Akanbi Chinyere Njeze Patricia Ukoli Paula Migliardi Linda Larcombe Gayle Restall Laurie Ringaert Michael Payne John Kim Wangari Tharao Ayn Wilcox |
| author_facet | Rusty Souleymanov Bolaji Akinyele-Akanbi Chinyere Njeze Patricia Ukoli Paula Migliardi Linda Larcombe Gayle Restall Laurie Ringaert Michael Payne John Kim Wangari Tharao Ayn Wilcox |
| author_sort | Rusty Souleymanov |
| collection | DOAJ |
| description | Abstract Background This study explored the ethical issues associated with community-based HIV testing among African, Caribbean, and Black (ACB) populations in Canada, focusing on their perceptions of consent, privacy, and the management of HIV-related data and bio-samples. Methods A qualitative community-based participatory research (CBPR) approach was employed to actively engage ACB community members in shaping the research process. The design included in-depth qualitative interviews with 33 ACB community members in Manitoba, Canada. The study was guided by a Community Guiding Circle, which contributed to study design, data analysis, and interpretation. A diverse sample was recruited through community agencies, social media, and flyers, with considerations for variations in age, gender, sexual orientation, and geographical location. The study employed iterative inductive thematic data analysis. Findings Participants expressed significant concerns about the collection, sharing, and use of HIV data from healthcare encounters, revealing mistrust towards institutions like police, child welfare, and immigration accessing their health information. Their worries centered on the handling of biological samples, data misuse, potential human rights violations, HIV criminalization, deportations, challenging consent, privacy, and bodily autonomy principles. While open to contributing to medical research, they unanimously demanded greater transparency, informed consent, and control over the secondary use of their health data. Conclusions The study underscores the need for culturally safe approaches in HIV testing and ethical governance in healthcare for ACB communities. It highlights the importance of prioritizing participant empowerment, ensuring transparency, practicing informed consent, and implementing robust data security measures to balance effective HIV information management with the protection of individual rights. |
| format | Article |
| id | doaj-art-85ed0ece57384c02aec605537bd7699f |
| institution | Kabale University |
| issn | 1472-6939 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj-art-85ed0ece57384c02aec605537bd7699f2025-01-19T12:38:00ZengBMCBMC Medical Ethics1472-69392025-01-012611910.1186/s12910-025-01161-0Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in CanadaRusty Souleymanov0Bolaji Akinyele-Akanbi1Chinyere Njeze2Patricia Ukoli3Paula Migliardi4Linda Larcombe5Gayle Restall6Laurie Ringaert7Michael Payne8John Kim9Wangari Tharao10Ayn Wilcox11Faculty of Social Work, University of ManitobaFaculty of Social Work, University of ManitobaDepartment of Community Health Sciences, Rady Faculty of Health Sciences, University of ManitobaFaculty of Social Work, University of ManitobaWinnipeg Regional Health AuthorityDepartment of Internal Medicine, Rady Faculty of Health Sciences, University of ManitobaDepartment of Occupational Therapy, Rady Faculty of Health Sciences, University of ManitobaNine Circles Community Health CentreNine Circles Community Health CentreManitoba HIV-STBBI Collective Impact NetworkWomen’s Health in Women’s Hands Community Health CentreKlinic Community HealthAbstract Background This study explored the ethical issues associated with community-based HIV testing among African, Caribbean, and Black (ACB) populations in Canada, focusing on their perceptions of consent, privacy, and the management of HIV-related data and bio-samples. Methods A qualitative community-based participatory research (CBPR) approach was employed to actively engage ACB community members in shaping the research process. The design included in-depth qualitative interviews with 33 ACB community members in Manitoba, Canada. The study was guided by a Community Guiding Circle, which contributed to study design, data analysis, and interpretation. A diverse sample was recruited through community agencies, social media, and flyers, with considerations for variations in age, gender, sexual orientation, and geographical location. The study employed iterative inductive thematic data analysis. Findings Participants expressed significant concerns about the collection, sharing, and use of HIV data from healthcare encounters, revealing mistrust towards institutions like police, child welfare, and immigration accessing their health information. Their worries centered on the handling of biological samples, data misuse, potential human rights violations, HIV criminalization, deportations, challenging consent, privacy, and bodily autonomy principles. While open to contributing to medical research, they unanimously demanded greater transparency, informed consent, and control over the secondary use of their health data. Conclusions The study underscores the need for culturally safe approaches in HIV testing and ethical governance in healthcare for ACB communities. It highlights the importance of prioritizing participant empowerment, ensuring transparency, practicing informed consent, and implementing robust data security measures to balance effective HIV information management with the protection of individual rights.https://doi.org/10.1186/s12910-025-01161-0HIV community-based testingEthical concernsEthical considerationsHealth dataSecondary use of biomaterials |
| spellingShingle | Rusty Souleymanov Bolaji Akinyele-Akanbi Chinyere Njeze Patricia Ukoli Paula Migliardi Linda Larcombe Gayle Restall Laurie Ringaert Michael Payne John Kim Wangari Tharao Ayn Wilcox Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada BMC Medical Ethics HIV community-based testing Ethical concerns Ethical considerations Health data Secondary use of biomaterials |
| title | Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada |
| title_full | Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada |
| title_fullStr | Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada |
| title_full_unstemmed | Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada |
| title_short | Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada |
| title_sort | navigating ethics in hiv data and biomaterial management within black african and caribbean communities in canada |
| topic | HIV community-based testing Ethical concerns Ethical considerations Health data Secondary use of biomaterials |
| url | https://doi.org/10.1186/s12910-025-01161-0 |
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