A Community-Based Participatory Research Study of HIV and HPV Vulnerabilities and Prevention in Two Pacific Islander Communities: Ethical Challenges and Solutions

• Published in: Journal of empirical research on human research ethics Vol. 8; no. 1; pp. 68 - 78
• Main Authors: Distefano, Anthony, Quitugua, Lourdes, Hui, Brian, Barrera-Ng, Angelica, Peters, Ruth, Vunileva, 'Isileli, Dimaculangan, Jeany, Tui'one, Vanessa, Takahashi, Lois, Tanjasiri, Sora Park
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA University of California Press 01-02-2013; SAGE Publications; Sage Publications Ltd
• Subjects: AIDS; Bioethics; Capacity Building; Collaboration; Communities; Community health care; Community Health Services; Community-Based Participatory Research - ethics; Community-Engaged Research with HIV+ Populations; Cooperative Behavior; Culture; Disease prevention; Ethics; Ethics, Research; Focus groups; HIV; HIV Infections - prevention & control; Human immunodeficiency virus; Human papillomavirus; Humans; Institutional review boards; Oceanic Ancestry Group; Papillomaviridae; Privacy; Religion; Research ethics; Research universities; Residence Characteristics; Social ethics; Social Justice; Taboos; Trust; Universities; Virus Diseases - prevention & control; Virus Diseases - virology; Pacific Islands; human papillomavirus (HPV); Chamorro; Pacific Islanders; HIV; Tongan; research ethics; social justice; community-based participatory research
• ISSN: 1556-2646; 1556-2654
• DOI: 10.1525/jer.2013.8.1.68

We describe ethical issues that emerged during a one-year CBPR study of HIV and human
papillomavirus (HPV) vulnerabilities and prevention in two Pacific Islander
(PI) communities, and the collaborative solutions to these challenges reached by
academic and community partners. In our project case study analysis, we found that ethical tensions
were linked mainly to issues of mutual trust and credibility in PI communities; cultural taboos
associated with the nexus of religiosity and traditional PI culture; fears of privacy breaches in
small, interconnected PI communities; and competing priorities of scientific rigor versus direct
community services. Mutual capacity building and linking CBPR practice to PI social protocols are
required for effective solutions and progress toward social justice outcomes.