在加拿大的黑人、非洲裔和加勒比裔社区中应对艾滋病毒数据与生物材料管理中的伦理问题。
Navigating ethics in HIV data and biomaterial management within Black, African, and Caribbean communities in Canada.
作者信息
Souleymanov Rusty, Akinyele-Akanbi Bolaji, Njeze Chinyere, Ukoli Patricia, Migliardi Paula, Larcombe Linda, Restall Gayle, Ringaert Laurie, Payne Michael, Kim John, Tharao Wangari, Wilcox Ayn
机构信息
Faculty of Social Work, University of Manitoba, 173 Dafoe Road West, Tier Building, office 500 C, Winnipeg, Winnipeg, MB, R3T 2N2, Canada.
Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
出版信息
BMC Med Ethics. 2025 Jan 16;26(1):5. doi: 10.1186/s12910-025-01161-0.
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.
背景
本研究探讨了加拿大非洲、加勒比和黑人（ACB）人群中基于社区的艾滋病毒检测相关的伦理问题，重点关注他们对同意、隐私以及艾滋病毒相关数据和生物样本管理的看法。
方法
采用定性的基于社区的参与式研究（CBPR）方法，积极让ACB社区成员参与塑造研究过程。该设计包括对加拿大曼尼托巴省33名ACB社区成员进行深入的定性访谈。该研究由一个社区指导小组指导，该小组为研究设计、数据分析和解释做出了贡献。通过社区机构、社交媒体和传单招募了一个多样化的样本，同时考虑了年龄、性别、性取向和地理位置的差异。该研究采用了迭代归纳主题数据分析。
结果
参与者对医疗保健接触中艾滋病毒数据的收集、共享和使用表示了重大担忧，对警察、儿童福利和移民等机构获取他们的健康信息表示不信任。他们的担忧集中在生物样本的处理、数据滥用、潜在的人权侵犯、艾滋病毒定罪、驱逐出境、具有挑战性的同意、隐私和身体自主权原则。虽然他们愿意为医学研究做出贡献，但他们一致要求提高透明度、获得知情同意，并对其健康数据的二次使用进行控制。
结论
该研究强调了在ACB社区的艾滋病毒检测和医疗保健伦理治理中采用文化安全方法的必要性。它强调了优先赋予参与者权力、确保透明度、实行知情同意以及实施强有力的数据安全措施以平衡有效的艾滋病毒信息管理与保护个人权利的重要性。
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