TY  - JOUR
T1  - Ethical Engagement and Management of HIV-Related Data and Biomaterials in Black, African, and Caribbean Canadian Communities
A1  - Nattapong Srisawat
A1  - Ploy Chantarangsu
JF  - Asian Journal of Ethics in Health and Medicine
JO  - Asian J Ethics Health Med
SN  - 3108-5059
Y1  - 2022
VL  - 2
IS  - 1
DO  - 10.51847/PSv8HBKwZt
SP  - 157
EP  - 165
N2  - Focusing on African, Caribbean, and Black (ACB) communities in Canada, this research explored the ethical challenges of community-based HIV testing, highlighting participants’ perspectives on consent, confidentiality, and the handling of HIV-related data and biospecimens. This research adopted a qualitative, community-based participatory approach (CBPR) to ensure African, Caribbean, and Black (ACB) community members were actively involved throughout the study. Thirty-three ACB individuals in Manitoba, Canada, participated in detailed qualitative interviews. Oversight and guidance were provided by a Community Guiding Circle, which contributed to shaping the study design, analyzing data, and interpreting findings. Participants were recruited through a combination of community organizations, social media outreach, and flyer distribution, with careful attention to capturing diversity in age, gender, sexual orientation, and geographic location. The collected data were examined using an iterative, inductive thematic analysis to identify emerging patterns and themes." Participants voiced deep concerns regarding the collection, sharing, and utilization of HIV-related data obtained during healthcare interactions, reflecting a pronounced mistrust of institutions such as the police, child welfare agencies, and immigration authorities having access to their personal health information. Their apprehensions focused on the management of biological samples, the potential for data misuse, violations of human rights, the criminalization of HIV, deportation risks, and threats to consent, privacy, and bodily autonomy. Although they expressed willingness to participate in medical research, participants consistently emphasized the need for greater transparency, robust informed consent processes, and enhanced control over any secondary use of their health data." The findings emphasize the necessity of culturally safe practices in HIV testing and ethical oversight within healthcare for African, Caribbean, and Black (ACB) communities. The study highlights the critical importance of empowering participants, maintaining transparency, upholding informed consent, and enforcing strong data protection measures to ensure that the management of HIV-related information aligns with the safeguarding of individual rights.
UR  - https://smerpub.com/article/ethical-engagement-and-management-of-hiv-related-data-and-biomaterials-in-black-african-and-caribb-leoj3jnidz4ivo7
ER  -