Exploitation and community engagement: Can Community Advisory Boards successfully assume a role minimising exploitation in international research?

Pratt, Bridget; Lwin, Khin Maung; Zion, Deborah; Nosten, François; Loff, Bebe; Cheah, Phaik Yeong

doi:10.1111/dewb.12031

Cited by 52 publications

(65 citation statements)

References 18 publications

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“…In contrast, some studies work intensively with a CAB, with the CAB having more authority in determining the next research agenda, almost like a community partner in a CBPR model (Cooper, 2015). On various occasions, researchers have raised ethical concerns when working with CABs (Flicker, Travers, Guta, McDonald, & Meagher, 2007; Pratt et al, 2015). Due to the diverse ways CABs are used in research studies, we purposefully did not include discussion about CABs in the research recruitment guidelines.…”

Section: Discussionmentioning

confidence: 99%

Guidelines for research recruitment of underserved populations (EERC)

Matsuda

Brooks

Beeber

2016

Applied Nursing Research

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Purpose Despite concerted efforts to establish health equity, significant disparities persist. One roadblock to eliminating health disparities is the inadequate recruitment of underserved populations, which prevents researchers from creating culturally-tailored interventions. To further develop the science of recruitment, we argue that a systematic approach should be applied to research participant recruitment. Given the lack of practical and comprehensive recruitment conceptual frameworks or guidelines in the literature, the authors propose newly synthesized guidelines for research recruitment of underserved populations: EERC (evaluate, engage, reflect, and carefully match). Methods The EERC guidelines are delineated, and the application of these guidelines is illustrated through a study recently conducted by the authors. Results The guidelines consist of the following four components: 1. Evaluate the composition of the research team; 2. Engage fully with the community by working with key informants and cultural insiders; 3. Reflect the unique cultural characteristics of the community in the research conduct; and 4. Carefully use a matching technique. The application component of the article demonstrates concrete examples of how the guidelines can enhance research recruitment for an underserved population. Conclusion The authors intend these guidelines to be broadly applicable for research teams regardless of research design or characteristics of the underserved population. Application of these guidelines in nursing and health science will contribute to increasing research recruitment of underserved populations, with the goal of reducing health disparities and achieving health equity for all persons.

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Section: Discussionmentioning

confidence: 99%

Guidelines for research recruitment of underserved populations (EERC)

Matsuda

Brooks

Beeber

2016

Applied Nursing Research

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“…As well, it is important to acknowledge that marginalized communities, especially those with high racial diversity have historically been exploited in research. 38 Efforts to engage community members without burdening them were employed to increase involvement, such as conducting listening sessions with individuals and small groups to accommodate staffing requirements and busy family schedules. We further engaged those voices in data interpretation and decision-making around program planning.…”

Section: Cbpar Is the Right Approach For The Ffll Initiativementioning

confidence: 99%

Developing Intergenerational Interventions To Address Food Insecurity among Pre-School Children: A Community-based Participatory Approach

Jarrott

Cao

Dabelko‐Schoeny

et al. 2019

Journal of Hunger & Environmental Nutrition

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Children and older adults are especially vulnerable to the negative effects of food insecurity. Intergenerational strategies often engage youth and elders in shared programming that supports each group's needs. With community partners, we established a community-based participatory action research (CBPAR) partnership to improve knowledge, access, and consumption related to healthy food at four child care centers in two states using intergenerational practices. The current paper represents work of a dedicated planning year (Year 1) to develop implementation and research plans for subsequent years of the 5-year grant. Work was guided by Israel and colleagues' CBPAR principles. KEYWORDSFood security; healthy food access; community food access; intergenerational program; early childhood; older adult; communitybased participatory action research CONTACT Shannon E. Jarrott

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“…Nonetheless, from its tone and the provisions, it seems to refer to exploitation in the sense of taking unfair advantage of community members. [41] Therefore, collaborative involvement of a CAB, to provide a forum for members of the community to share their views on ethical issues that the proposed research raises, is considered a way to reduce the potential for exploitation. In relation to data sharing, it would be difficult, if not impossible, for members of the community on the CAB to effectively share views on data that are yet to be collected, analysed and shared.…”

Section: Informed Consentmentioning

confidence: 99%

Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience

Akintola

2018

S Afr J BL

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It is increasingly recognised that effective and appropriate data sharing in biobanking research requires the development of models of good data-sharing policy capable of ensuring that the rights and privacy interests of participants are protected. However, the effectiveness and efficacy of biobank research depend on data and samples. In the same vein, making such data available to the research community generates tension between two important goals: advancing scientific goals, and protecting the individual privacy interests of the tissue source. More critically, data sharing requires the development of models that promote an environment in which privacy rights and interests of participants are protected throughout the lifecycle of biobank initiatives. Many ethical issues are raised when genomics research is conducted on populations characterised by lower average income and literacy levels, such as populations included in lower-middle income countries (LMICs). These issues are further exacerbated in Nigeria by cultural and religious inflections. In this paper, to analyse the implications of data sharing within the legal framework of an LMIC, an analysis of existing laws in Nigeria was conducted. It was discovered that there were no provisions relating directly to data sharing, and its governance framework could only be gleaned from the patchwork of laws on privacy and confidentiality in Nigeria. There is a need for ethical guidelines in Nigeria to be adapted to the changing landscape of science, which increasingly involves storage and secondary use of samples and data. Current laws are inadequate for the challenges presented by biobanking.

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Exploitation and community engagement: Can Community Advisory Boards successfully assume a role minimising exploitation in international research?

Abstract: It has been suggested that community advisory boards (CABs

Cited by 52 publications

References 18 publications

Guidelines for research recruitment of underserved populations (EERC)

Guidelines for research recruitment of underserved populations (EERC)

Developing Intergenerational Interventions To Address Food Insecurity among Pre-School Children: A Community-based Participatory Approach

Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience

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