TABLE 3.
Articles in Literature Review Discussing Ethical Challenges of Community-Based Participatory Research
| Ethical Challenge | Citations, No.a |
|---|---|
| Insider–outsider tensions | 24 |
| Differing assumptions, perceptions, expectations; conflicting agendas; mistrust from communities | 17 |
| Power differentials between researchers and community; differences in cultural values; racism; seeking equality between partners; power/coercion | 17 |
| Protecting communities | 22 |
| Challenges with consenting community; addressing collective implications of studies; determining risk–benefit ratio | 18 |
| Confidentiality/anonymity is challenging in many closed communities and may be inappropriate; threats to privacy of health information | 8 |
| Community representation (challenges determining who is community, who speaks for community, who should sit on boards; what to do when working with multiple communities or divided communities) | 15 |
| Data sharing; reporting and using results (dealing with unflattering data or unclear results, producing tangible community benefits, defining data ownership and publication rights) | 12 |
| Working with IRBs (IRBs are unfamiliar with CBPR practices; may hold inapplicable assumptions about research methods and data ownership, be unfamiliar with dynamic nature of researcher–participant interaction, assume protocol can be stipulated in advance) | 12 |
| Managing dual roles as community members and researchers (conflicting loyalties, shifting roles of participants) | 8 |
| Practicalities (time investment, costs) | 6 |
| Challenges of community commitment (community partners may pull out, may not maintain interest and compromise study, may be hard to keep track of) | 5 |
| Cyclical, dynamic, iterative, and evolving nature of CBPR (poses problems for establishing clear ethical codes or guidelines; ethics cannot be predetermined) | 5 |
| Lack of explicit guidelines (lack of published examples on how to ensure ethical integrity in CBPR; no defined method for determining study effectiveness) | 3 |
| Ethics assumed (CBPR is seen to be ethical response; ethical issues may thus be neglected) | 3 |
| Misconduct occurs under ethical guise of CBPR (using community members to gather data only; not letting community know about outcomes) | 2 |
| Resource and funding challenges (CBPR is unrecognized by funding agencies but requires considerable resources) | 2 |