Understanding Community-Based Processes for Research Ethics Review: A National Study

Shore, Nancy; Brazauskas, Ruta; Drew, Elaine M.; Wong, Kristine A.; Moy, Lisa; Baden, Andrea Corage; Cyr, Kirsten; Ulevicus, Jocelyn; Seifer, Sarena D.

doi:10.2105/ajph.2010.194340

Cited by 43 publications

(31 citation statements)

References 21 publications

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“…There may be agencies that partner with the academic community or an advisory board constituted to oversee the project, but these bodies tend not to have the strong oversight consistent with that of a tribal government or government agency such as a health board. Certainly nonnative communities cannot duplicate the formal governing bodies of tribes, but there has been growing advocacy for community IRBs or research review boards by organizations such as the Community---Campus Partnerships for Health 21,22,32 and the current findings lend further support for this advocacy given the increase in protection and control for the community. However, nonnative communities have to weigh the benefit of formal governance with the costs to develop such governance.…”

Section: Discussionmentioning

confidence: 60%

Enhancing Stewardship of Community-Engaged Research Through Governance

Oetzel¹,

Villegas

Zenone

et al. 2015

Am J Public Health

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Objectives. We explored the relationship of community-engaged research final approval type (tribal government, health board, or public health office (TG/HB); agency staff or advisory board; or individual or no community approval) with governance processes, productivity, and perceived outcomes. Methods. We identified 294 federally funded community-engaged research projects in 2009 from the National Institutes of Health’s Research Portfolio Online Reporting Tools, Centers for Disease Control and Prevention’s Prevention Research Centers, and Native American Research Centers for Health databases. Two hundred (68.0%) investigators completed a survey about governance processes and productivity measures; 312 partners (77.2% of 404 invited) and 138 investigators (69.0% of 200 invited) completed a survey about perceived outcomes. Results. Projects with TG/HB approval had increased likelihood of community control of resources (odds ratios [ORs] ≥ 4.80). Projects with other approvals had decreased likelihood of development or revision of institutional review board policies (ORs ≤ 0.37), having written agreements (ORs ≤ 0.17), and agreements about publishing (ORs ≤ 0.28), data use (ORs ≤ 0.17), and publishing approval (ORs ≤ 0.14). Conclusions. Community-engaged research projects with TG/HB approval had strong stewardship of project resources and agreements. Governance as stewardship protects community interests; thus, is an ethical imperative for communities, especially native communities, to adopt.

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Section: Discussionmentioning

confidence: 60%

Enhancing Stewardship of Community-Engaged Research Through Governance

Oetzel¹,

Villegas

Zenone

et al. 2015

Am J Public Health

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“…IRBs are often housed within academic institutions or community institutions, such as hospitals [15], but some IRBs are corporate entities. In either case, community considerations are often missing from IRB deliberations [16,17], although IRBs are federally required to have community members and consider community concerns, according to Title 21 of the Code of Federal Regulations (CFR) [18]. Some IRBs do not fully assess community protections, consent, risks, or benefits, restricting their main focus to individual protections [16], and thus failing to incorporate another important ethical principle, respect for communities [19].…”

Section: Purpose and Ethical Principles Of Institutional Review Boardsmentioning

confidence: 99%

“…Community-based research shifts the traditional power dynamic, raising questions of equity, co-ownership of data, and mutual benefit. Shore et al's [16] study of community-engaged researchers' experiences with IRBs revealed that there is a need to expand the ethical analysis to include communitylevel considerations, which they posit is often missing in the IRB process.…”

Section: Evolution Of Community Ethics Reviewsmentioning

confidence: 99%

Expanding Ethics Review Processes to Include Community-Level Protections: A Case Study from Flint, Michigan

Key¹

2017

AMA Journal of Ethics

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As the Flint community endeavors to recover and move forward in the aftermath of the Flint water crisis, distrust of scientific and governmental authorities must be overcome. Future community engagement in research will require community-level protections ensuring that no further harm is done to the community. A community ethics review explores risks and benefits and complements institutional review board (IRB) review. Using the case of Flint, I describe how community-level ethical protections can reestablish a community's trust. All IRBs reviewing protocols that include risk to communities and not merely individual participants should consider how community members are engaged in the proposed research and identify and respond to questions and domains of concern from community members. CaseAll researchers who use federal funding to do their work, including those interested in investigating effects of lead water contamination on health in the aftermath of the Flint water crisis, are required to have their protocols reviewed by an institutional review board (IRB) to motivate compliance with federal human subject research regulations. A team of researchers from University X has proposed a protocol that involves investigating acute changes in kidney function, new onset of high blood pressure and gout, and each of these conditions' relationship with changes in Flint water composition. They hope to arrange for community members' blood tests, urine tests, blood pressure measurements, and joint aspiration and fluid analysis. Furthermore, they hope to enter community members' homes to sample and test their tap water for lead, phosphates, and trihalomethanes. The protocol is being reviewed by an IRB from University X. Some members of the Flint community have raised strong opposition to this research, citing no reasonable basis for trusting the researchers or their institutions to do the research ethically or to justly share the risks and benefits of their work with the community. CommentaryThe community of Flint, Michigan, suffered a manmade public health crisis based on the decision of a governor-appointed emergency manager (EM) to change Flint's water

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“…Communities benefit not only from using research to support progress but also from the opportunity for the "expression of self-determination" (57, p. 4). Their input can help researchers, as well as community organizations and private-sector partners, by generating data to inform program activities (72). Academic institutions can benefit from new partnerships between stakeholders and the popularity of community-centered programs and services (33).…”

Section: Community Engagementmentioning

confidence: 99%

Translating Evidence into Population Health Improvement: Strategies and Barriers

Woolf

Purnell

Simon

et al. 2015

Annu. Rev. Public Health

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Among the challenges facing research translation-the effort to move evidence into policy and practice-is that key questions chosen by investigators and funders may not always align with the information priorities of decision makers, nor are the findings always presented in a form that is useful for or relevant to the decisions at hand. This disconnect is a problem particularly for population health, where the change agents who can make the biggest difference in improving health behaviors and social and environmental conditions are generally nonscientists outside of the health professions. To persuade an audience that does not read scientific journals, strong science may not be enough to elicit change. Achieving influence in population health often requires four ingredients for success: research that is responsive to user needs, an understanding of the decision-making environment, effective stakeholder engagement, and strategic communication. This article reviews the principles and provides examples from a national and local initiative.

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Understanding Community-Based Processes for Research Ethics Review: A National Study

Abstract: Community-based processes for ethics review consider community-level ethical issues that institution-based IRBs often do not.

Cited by 43 publications

References 21 publications

Enhancing Stewardship of Community-Engaged Research Through Governance

Enhancing Stewardship of Community-Engaged Research Through Governance

Expanding Ethics Review Processes to Include Community-Level Protections: A Case Study from Flint, Michigan

Translating Evidence into Population Health Improvement: Strategies and Barriers

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