Ethical Issues in Conducting Community-Based Participatory Research: A Narrative Review of the Literature

Abstract

Community-based participatory research (CBPR) is a methodology increasingly used within the social sciences. CBPR is an umbrella term that encompasses a variety of research methodologies, including participatory research, participatory action research, feminist participatory research, action research, and collaborative inquiry. At its core, they share five key attributes: (i) community as a unit of identity; (ii) an approach for the vulnerable and marginalized; (iii) collaboration and equal partnership throughout the entire research process; (iv) an emergent, flexible, and iterative process; and (v) the research process is geared toward social action. While there is no shortage of literature that highlights the benefits and potential of CBPR, relatively little discussion exists on the ethical issues associated with the methodology. In particular, current gaps within the literature include ethical guidance in (i) balancing community values, needs, and identity with those of the individual; (ii) negotiating power dynamics and relationships; (iii) working with stigmatized populations; (iv) negotiating conflicting ethical requirements and expectations from Institutional Review Boards (IRBs); and (v) facilitating social action emerging from the findings. For CBPR’s commendable goals and potential to be realized, it is necessary to have a more fulsome discussion of the ethical issues encountered while implementing a CBPR study. Further, a lack of awareness and critical reflection on such ethical considerations may perpetuate the very same problems this methodology seeks to address, namely, inequality, oppression, and marginalization. The purpose of this article is to provide a narrative review of the literature that identifies ethical issues that may arise from conducting CBPR studies, and the recommendations by researchers to mitigate such challenges.

Are you afraid of press and social media? Ethics in photovoice in participatory health research

“…Online (social) media can play an essential role in supporting and reconfirming images (words and visuals related to 'unfortunate' and 'underprivileged'). Re-stigmatization of people and place (Kwan and Walsh 2018) and the so-called 'place-based stigma' (Byrne, Elliott, and Williams 2016;Goffman 1968) are even more likely to occur with this online dimension. Whether or not they are accurate, such images have an impact on those living in these areas.…”

“…Social change rarely comes without a struggle or ethical issues (Davis and Vaughan 2019), and these are at the heart of every participatory study (Banks, Armstrong, and Carter et al 2013;Banks and Brydon-Miller. 2019;Groot, 2021.;Kwan and Walsh 2018;Sandlin, Quiroga, and Hammerand 2018;Wilson, Kenny, and Dickson-Swift 2018). Working with visual material, such as photographs taken by participants in participatory health research, raises specific ethical issues, especially when the press and online (social) media are involved.…”

Navigating participation and ethics with immigrant communities.

“…Traditional ethical safeguards for those who are considered "participants" in nonparticipatory research studies typically place high value on elements such as confidentiality, individual consent through written documents, and limiting compensation to reduce the chances of coercion. Although these are important ethical considerations, if strictly followed, they can also be counterproductive, obstructing true partnership, community empowerment, and the trust necessary to develop and maintain programs that are culturally congruent, community owned, and lead to long-term effective change (Kwan & Walsh, 2018).…”

Co-Designing Evidence-Based Videos in Health Care: A Case Exemplar of Developing Creative Knowledge Translation “Evidence-Experience” Resources

“…The potentials of co-design are best achieved when engagement moves beyond tokenistic involvement characterized by surficial consultation, toward entwined collaboration and co-production wherein stakeholders can influence the direction of the process, direct decision making to authentically contribute a shared-vision, and thereby increase the likelihood that their voices are reflected in both the process and product (Greenhalgh et al, 2016; Ocloo & Matthews, 2016). Skilled facilitation by an individual experienced in co-design and attentive to these differentials; explicit determination of group values from the onset of collaboration indicating the prioritization of stakeholder perspectives over academic priorities, and capacity for individuals to shape decisions can go some way toward mitigating the power imbalances inherent in the research process (Kwan & Walsh, 2018) and were perceived as beneficial to our group process and outputs. Other practical strategies aimed at equity employed in this project involved forthright discussions regarding meeting times and locations, and utilizing methods of communication driven by the unique needs of the group; reflecting in part, the flexibility required by the team and team leader, coordinator, or facilitator (Gandy, 2009).…”