Community-Based Participatory Research and the Ethics Review Process

Shore, Nancy

doi:10.1525/jer.2007.2.1.31

Cited by 38 publications

(36 citation statements)

References 11 publications

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“…This oversimplification may further inhibit attempts to develop effective and informed review processes that meet the needs of CBPR while maintaining the core set of principles upon which research ethics is predicated. Our approach is consistent with the moderate position taken by scholars seeking to find commonalities and reconcile these seemingly disparate interests (Ross et al, 2010b;Shore, 2007aShore, , 2007b.…”

supporting

confidence: 78%

“…This may result in situations where REBs/IRBs are approving studies that may be harmful to communities or, conversely, impeding innovative approaches that could have provided much-needed insights into complex issues (Boser, 2007;Bradley, 2007). Indeed, growing critiques have been levied by CBPR practitioners who have found ethics review processes difficult to navigate and unresponsive to their needs (Reid & Brief, 2009;Shore, 2007a). This has been explained, in part, by a lack of appropriate training for reviewers about iterative and participatory approaches to research (Lincoln & Tierney, 2004).…”

mentioning

confidence: 99%

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“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

Guţă

Nixon

Gahagan

et al. 2012

Journal of Empirical Research on Human Research Ethics

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Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.

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supporting

confidence: 78%

mentioning

confidence: 99%

“Walking along beside the Researcher”: How Canadian REBs/IRBs are Responding to the Needs of Community-Based Participatory Research

Guţă

Nixon

Gahagan

et al. 2012

Journal of Empirical Research on Human Research Ethics

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“…CEnR encompasses a range of research practices (Dubois et al 2011;Shore 2007;Shore et al 2010; Sieber ajob pr 19 AJOB Primary Research 2010). On one end is community-based participatory research, in which communities are full partners in shaping research goals, design, implementation, analysis, and dissemination.…”

Section: Introductionmentioning

confidence: 99%

Proximity, Ethical Dilemmas, and Community Research Workers

Richman

Alexander

True

2012

AJOB Primary Research

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Background:In community-engaged research (CEnR), recruitment and data collection are often assigned to community research workers (CRWs). CRWs are hired because of close ties with target communities and presumed greater success recruiting and gathering data from marginalized populations. The value conflicts and personal stress facing CRWs have been described in the international context; however, less attention has been paid to these issues in U.S. settings. Methods: Qualitative interviews were held with CRWs about their experiences with CEnR. Interviews were transcribed and coded using Atlas.ti. Results: The data indicate that CRWs working in settings controlled by the participants, such as neighborhood streets and participant homes, are more likely to face conflicts between following the norms of research and meeting what they perceive to be their everyday obligations to help specific others (duties of relational ethics) and to keep themselves safe. This suggests that "physical proximity" (understood as degree of penetration into the physical domain of the target research community) is an important factor in the ethics of actual practice in CEnR. Conclusions: CRWs often experience ethical complexities that are simply not in the realm of experience of most higher level researchers. How CRWs navigate conflicting ethical obligations can affect the quality and usefulness of the data collected and thereby affect communities by influencing policies informed by these data. Soliciting the perspectives of CRWs early in the process of research design and development is recommended to maximize the benefits achievable through CEnR.

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“…another research approach that is frequently identified as encountering difficulties in traditional 'regulatory' research ethics review is participatory and action research (Bhattacharya, 2007;Blake, 2007;Boser, 2007;Burke, 2007;Cahill et al, 2007;Martin, 2007;Owen, 2006;Shore, 2007;Williamson and Prosser, 2002). In addition to the previously addressed challenge of a significantly higher degree of unpredictability regarding the research process, which has an effect on the informed consent process, it also brings up the issue of the definition of the role of both researchers and participants.…”

Section: Ethics Methodology and Social Science And Humanities Researchmentioning

confidence: 99%