Participatory action research: considerations for ethical review

Khanlou, Nazilla; Peter, Elizabeth

doi:10.1016/j.socscimed.2004.10.004

Cited by 253 publications

(218 citation statements)

References 17 publications

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“…Renewal forms (progress reports) should enable researchers to describe progress in the preceding year, to promote ‘ sustained ’ engagement. This might impact the percentage of inquiries that RECs raise about engagement 32, 33, 34.…”

Section: Discussionmentioning

confidence: 99%

Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: opportunities and complexities

et al. 2018

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IntroductionClinical trials of biomedical HIV prevention modalities require the cooperation of multiple stakeholders. Key stakeholders, such as community members, may have stark vulnerabilities. Consequently, calls for HIV prevention researchers to implement “stakeholder engagement” are increasingly common. Such engagement is held to benefit inter‐stakeholder relations, stakeholders themselves and the research itself. The ethics review process presents a unique opportunity to strengthen stakeholder engagement practices in HIV prevention trials. However, this is not necessarily straightforward. In this article, we consider several complexities. First, is stakeholder engagement a legitimate component of what Research Ethics Committees (RECs) should review for HIV prevention trials? Second, what are the core features of engagement that should be under ethics review? Third, what are the key practices that should be highlighted in ethics review?MethodsTo address these questions, we examined the international ethics guidelines specialized for such trials (UNAIDS 2012, UNAIDS‐AVAC GPP 2011) and directly applicable to such trials (CIOMS 2016; WHO 2011). Thematic analysis was used to code and analyse these guidelines.Results and discussionEthics guidelines support REC review of engagement. Guidance recommends that engagement be broad and inclusive; early and sustained; and dynamic and responsive. Broad engagement practices include evaluating the context, planning in writing, and resourcing. RECs should assess engagement as part of a comprehensive review, and recommend revisions where necessary. Researchers should profile key elements of engagement valued in ethics guidance, when they draft ethics submissions. Importantly, the ethics review process should not undermine the ‘dynamic responsiveness’ required for excellent engagement in this field.ConclusionsAs evidence‐informed engagement strategies emerge, these should inform the ethics submission and review process. Both parties in the review process should strive to avoid a superficial, check‐list type approach that caricatures what should be a thorough, nuanced ethics review of a rich, responsive engagement process.

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Section: Discussionmentioning

confidence: 99%

Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: opportunities and complexities

et al. 2018

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“…A study by Flickers and associates highlights the fact that in their institution, the IRB ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common community based and behavioral research that often takes place in the public health field. They agree that the IRB thus thwarts public health research by not approving their research [13]. While the IRB is a great institution that protects individuals from unethical behaviors by researchers, the current IRB system is incompatible with CBPR researchers and may be too stringent for biomedical research, as well.…”

Section: How the Irb Restricts Researchmentioning

confidence: 99%

Bringing the IRB into the Community: A New Framework for the Ethical Regulation of CBPR

Puckett¹

2017

MOJPH

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The conduct of institutional review boards (IRB) in ensuring ethical protocol is followed has been debated and evaluated for a number of years. The IRB decision-making process utilizes a number of regulations in order to protect human subjects in research purposes. Many critics of the system argue that the strict guidelines make it increasingly difficult to retrieve beneficial results and conduct the experiment as initially planned. However, others believe that the standardization involved with the IRB processes makes research practice safer, more transparent, and more effective. Our paper critiques the ethical component of IRB research and its effects on inhibiting or promoting public health practice. In particular, we will address whether current IRB guidelines constrain communitybased participatory research.

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“…Centrée sur le désir de faire émerger un savoir peu affirmé publiquement, notre démarche de recherche voulait s'ancrer dans l'expérience et la vie de ces personnes et de leur communauté (Khanlou et Peter, 2005: 2338. De cette manière, il nous semblait possible d'accéder à un savoir plus expérientiel qui interroge les savoirs experts dans leur dimension normative (Baron, 2007 : 139 ;Heron et Reason, 1997).…”

Section: Introductionunclassified

Transmettre la parole de parents en milieu de pauvreté

René

Laurin²

2010

nps

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Participatory action research: considerations for ethical review

Cited by 253 publications

References 17 publications

Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: opportunities and complexities

Strengthening stakeholder engagement through ethics review in biomedical HIV prevention trials: opportunities and complexities

Bringing the IRB into the Community: A New Framework for the Ethical Regulation of CBPR

Transmettre la parole de parents en milieu de pauvreté

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