Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research

Hoover, Stephanie M.; Tiwari, Soni; Kim, Jimin; Green, Melissa; Richmond, Al; Wynn, Mysha; Nisbeth, Kyle Simone; Rennie, Stuart; Corbie-Smith, Giselle

doi:10.18865/ed.29.2.309

Cited by 5 publications

(4 citation statements)

References 21 publications

(22 reference statements)

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“…There is a tremendous amount of interpersonal communication necessary to ensure that we achieve enough common footing across the consortium to allow for equitable research across the consortium. Further, regular meetings provide opportunities to establish agreement on broad, ethical principles thereby strengthening the foundation upon which diverse stakeholders can manage power dynamics and building relationships ( Hoover et al, 2019 ). Achieving this common footing requires continual check-ins with each other to understand the changing needs of each partner.…”

Section: Discussion: Overcoming Challengesmentioning

confidence: 99%

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Blanchard¹,

Hiratsuka²,

Beans³

et al. 2020

Collaborations: A Journal of Community-Based Research and Practice

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Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices related to genomics. This article reflects on key successes and challenges behind CEIGR's efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency. The structure of CEIGR represents an important shift away from a traditional model centered on a university-based principal investigators toward a partner-centered research approach that emphasizes equity and community control by distributing power and decision-making across all CEIGR partner sites. We discuss three features of CEIGR that have contributed to this shift towards an equitable, community-driven partnership: 1) balancing local priorities with collective goals; 2) distributing power in ways that promote equitable partnerships; and 3) capacity building and co-learning across partner sites. The discussion of these three areas in this article speaks to a particular strength of our Center: the interdependence among partners and collective willingness to maintain a plasticity of leadership that creates space for all of our partners to lead, support, exchange and strengthen ELSI research.

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Section: Discussion: Overcoming Challengesmentioning

confidence: 99%

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Blanchard¹,

Hiratsuka²,

Beans³

et al. 2020

Collaborations: A Journal of Community-Based Research and Practice

View full text Add to dashboard Cite

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“…It is important for researchers to respect and share power with community partners and to ensure that these communities benefit from the research in some way. 9 The need to establish relationships with gatekeepers is heightened during parent-adolescent dyadic research due to the vulnerability of youth and the family unit. Some effective and appropriate recruitment strategies that incorporate gatekeepers include sharing data collection protocols with family units and gatekeepers and granting opportunities for families and gatekeepers to meet the research team and ask questions about the research process.…”

Section: Ethical Considerations Throughout the Research Processmentioning

confidence: 99%

“…For work with underserved or highly marginalized communities, it is a preferred and ethically appropriate approach for dyadic researchers to connect with gatekeepers early in the research process and to apply dialogic strategies with the community to identify the best approaches to implementing the research. It is important for researchers to respect and share power with community partners and to ensure that these communities benefit from the research in some way 9 . The need to establish relationships with gatekeepers is heightened during parent‐adolescent dyadic research due to the vulnerability of youth and the family unit.…”

Section: Ethical Considerations Throughout the Research Processmentioning

confidence: 99%

Ethical Considerations for Parent‐Adolescent Dyadic Research

Gabbidon

Chenneville

Rote

2022

Ethics & Human Research

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Over the last few years, the use of dyadic research methods has expanded considerably. One area that has benefited from this type of research is the study of the family unit, particularly parent‐adolescent dyads. Dyadic research allows investigators to assess relationship dynamics, processes, and congruences within a family unit, as well as the distinct experiences of each member of the dyad. However, like all emerging and expanding areas of human subjects research, parent‐adolescent dyadic research faces several ethical challenges. Given the advantages of parent‐adolescent dyadic research for examining family relational processes, this article addresses ethical challenges experienced by dyadic researchers that often temper interests in applying these approaches. Drawing on the scholarly literature and the authors’ experiences conducting parent‐adolescent dyadic research, we discuss heightened and unique ethical challenges that arise in this area of inquiry and provide recommendations on how to best navigate those issues.

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“…However, a greater number of funding agencies are recognizing this challenge and supporting greater resource allocation to community partners. An important area for researchers embarking on CBPR are the ethics involved in community/ academic partnerships, including addressing the researchers' cultural and historical context of identity within the community, as well as decision-making power and ownership of results (Hoover et al 2019). In addition to these potential challenges, several limitations common among CBPR studies have been cited in the literature and were summarized by Faridi et al (2007).…”

Section: Advantages and Challenges Of Conducting Cbprmentioning

confidence: 99%

Community-Based Participatory Research and Human-Centered Design Principles to Advance Hearing Health Equity

2020

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Objectives: Inclusive and equitable research is an ethical imperative. Community-based participatory research (CBPR) as well as human-centered design are approaches that center partnership between community members and academic researchers. Together, academic-community research teams iteratively study community priorities, collaboratively develop ethical study designs, and co-create innovations that are accessible and meaningful to the community partners while advancing science. The foundation of the CBPR approach is reliant on its core principles of equity, colearning, shared power in decision-making, reciprocity, and mutual benefit. While the CBPR approach has been used extensively in public health and other areas of healthcare research, the approach is relatively new to audiology, otolaryngology, and hearing health research. The purpose of the present article is to advance an understanding of the CBPR approach, along with principles from human-centered design, in the context of research aimed to advance equity and access in hearing healthcare. Design: The literature is reviewed to provide an introduction for auditory scientists to the CBPR approach and human-centered design, including discussion of the underlying principles of CBPR and where it fits along a community-engaged continuum, theoretical and evaluation frameworks, as well as applications within auditory research. Results: Recent applications of CBPR have been framed broadly within the theoretical positions of the socioecological model for a systems-level approach to community-engaged research and the Health Services Utilization model within health services and disparities research using CBPR. Utilizing human-centered design strategies can work in tandem with a CBPR approach to engage a wide range of people in the research process and move toward the development of innovative yet feasible solutions. Conclusions: Leveraging the principles of CBPR is an intricate and dynamic process, may not be a fit for some topics, some researchers’ skillsets, and may be beyond some projects’ resources. When implemented skillfully and authentically, CBPR can be of benefit by elevating and empowering community voices and cultural perspectives historically marginalized in society and underrepresented within research. With a focus on health equity, this review of CBPR in the study of hearing healthcare emphasizes how this approach to research can help to advance inclusion, diversity, and access to innovation.

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Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research

Cited by 5 publications

References 21 publications

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Ethical Considerations for Parent‐Adolescent Dyadic Research

Community-Based Participatory Research and Human-Centered Design Principles to Advance Hearing Health Equity

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