We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect (...) to projects and individuals who engage in community-based collaborations. The differences that arose from the interviews were seeking equality between the partners, the need for the community partner to defend the community, dealing with unflattering data, meeting community expectations and producing tangible benefits to the community. (shrink)

Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research (...) by introducing a collaborative process meant to encourage increased participation by special populations and narrow the parity gap in effective mental health treatment and services delivery. (shrink)

Community-based participatory research is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with (...) HIV and addictions issues. The structure of hospital-based care delivery required the team to account for participants’ health-related limitations, including adopting recruitment strategies built on clinical care, and modifying the original research design to better protect participant confidentiality in a small space. Although CBPR offers an important strategy for researching with members of hospitalized communities, it requires research teams to develop context-relevant approaches to ethically engaging community members that recognize the ways clinical space mediates the research process. (shrink)

This paper focuses on ethics in community-based participatory research (CBPR) from inception to post-publication. Central to CBPR is a collaborative, partnership approach that recognises the strengths of partners and engages their distinctive voice and knowledge in the research process. While the ethical complexities that arise in the course of research practice in CBPR can transcend individual projects, they are also grounded in the particularity of the project, community, and research partners. This (...) paper reflects on the experiences of two participatory social policy research projects on housing in Ireland, conducted over the past three years. These projects involved collaborating with older people living in rural areas nationwide and with residents of small communities on offshore islands. The paper explores the ethics of engagement (regarding methods of involvement and access), and the ethics of representation (incorporating the depiction and sharing of research findings) and argues that researchers must pay attention to the specificity of each project and be alive to generating an organic research ethics in how research is set up, conducted, represented, and disseminated. In so doing, we can better foster agency and authenticity in the relationships developed throughout research processes and reflect on and meet shared values and responsibilities. (shrink)

Mistrust and fear of research often exist in minority communities because of assumptions, preconceived ideas, and historical abuse and racism that continue to influence research participation. The research establishment is full of well-meaning ‘outsider’ investigators who recognize discrimination, health disparities, and insufficient health care providers in minority communities, but struggle in breaking through this history of mistrust. This article provides ethical insights from one such ‘insider-outsider’, community-based participatory research project implemented via community (...) health advisors in the Mississippi Delta. Both community-based participatory research and community health advisors provide opportunities to address the ethical issues of trust, non-maleficence, and justice in minority communities. Implications for ethics-driven nursing research are discussed. (shrink)

Ethics in participatory research -- Partnership, collaboration and power -- Blurring the boundaries between researcher and researched, academic and activist -- Community rights, conflict and democratic representation -- Co-ownership, dissemination and impact -- Anonymity, privacy, and confidentiality -- Institutional ethical review processes -- Social action for social change.

Conventional, positivist science is not well suited for addressing the contemporary risk landscape. To address high-uncertainty, high-stakes risks, Funtowicz and Ravetz have called for a postnormal science. Two key characteristics of postnormal science are the involvement of an extended peer community and the deliberation of extended facts. The health research community has responded to the shortcomings of normal science with approaches to field research, known collectively as community-based participatory research. A review of (...) case literature shows that although CBPR is not inherently postnormal, it can be friendly to a postnormal approach. A postnormal CBPR practice would rely more heavily on a deliberative process, which engages a broad range of expertise, including experts in normal science, in decisions about data collection, analysis, and actions. (shrink)

BackgroundDrug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional (...) ethics review boards. We conducted a scoping review to identify ethical issues in CBPR with people who use drugs that were documented in peer-reviewed and grey literature.MethodsThe search strategy focused on three areas; community-based research, ethical issues, and drug use. Searches of five academic databases were conducted in addition to a grey literature search, hand-searching, and consultation with organizational partners and key stakeholders. Peer reviewed literature and community reports published in English between 1985 and 2013 were included, with initial screening conducted by two reviewers.ResultsThe search strategy produced a total of 874 references. Twenty-five references met the inclusion criteria and were included in our thematic analysis. Five areas were identified as important to the ethics of CBPR with people who use drugs: 1) participant compensation, 2) drug user perspectives on CBPR, 3) peer recruitment and representation in CBPR, 4) capacity building, and 5) participation and inclusion in CBPR.ConclusionsWe critically discuss implications of the emerging research in this field and provide suggestions for future research and practice. (shrink)

“Participatory research” is an umbrella term for a wide variety of scientific research projects that include participation of members of the lay public beyond simply using humans as “subjects” of research. In this chapter, we begin by surveying the variety of participatory research approaches across fields. We examine the goals of participatory research projects, including social and scientific value. Next, we apply a theoretical framework to challenges that participatory research faces. (...) We then survey three typologies of participatory research projects, each of which can illuminate and guide decisions in project development. We end by looking at participatory research approaches in health contexts, applying the theoretical resources we introduced earlier in the chapter. (shrink)

FOSTER J, CHIANG F, HILLARD RC, HALL P and HEATH A. Nursing Inquiry 2010; 17: 309–316 Team process in community‐based participatory research on maternity care in the Dominican RepublicA cross‐cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery community‐based participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. (...) The purpose of the study was to understand community perceptions of maternity services. This article highlights the activities that the research team carried out during each phase of the research process, and how they established team identity, team trust, and team efficacy. This research has created a platform for new avenues for health providers and community to partner to improve maternal‐newborn care. Community‐based participatory research is one way forward to address the past and present inequities constitutive of global health disparities. (shrink)

This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New (...) Zealand Ethics Committee, formed in 2012, responds to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research. (shrink)

Many reviewers of applications for ethical approval of research at universities struggle to understand what is considered ethical conduct in community-based research (CBR). Their difficulty in understanding CBR and the ethics embedded within it is, in part, due to the exclusion of CBR from researchers’ mandatory research ethics training. After all, CBR challenges both pedagogically and epistemologically the dominant paradigm/s whose worldviews, values and inherent structures of power help sustain the status quo within (...) academic institutions at large. Consequently, CBR ethics applications are often prolonged due to back-and-forth rebuttals. In this article, we analyse our experiences in a South African institution of the ethics approval process for our various CBR projects over the past couple of years. Data for this purpose was generated from analysis of our reflexive dialogues as well as our responses to feedback from the ethics review boards. To help support the trustworthiness of the study, we invited critical friends to a workshop to engage with our findings. We identified three main themes all associated with how the values, worldviews and approaches of CBR differ from those of the dominant research paradigm/s, that impeded on the progress of our applications through the ethics approval process. On the basis of our analysis, we offer guidelines and a participatory research checklist for university ethics review panels to help inform their evaluation of applications concerning CBR. While universities now actively promote community engagement initiatives, and since CBR is an efficacious approach to that end, we advocate for inclusion of CBR ethics in universities’ mandatory ethics training, to help address ethical concerns that impede CBR research. (shrink)

BackgroundIdentifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles.MethodsUsing a scoping review methodology, we identified (...) and evaluated seven studies using CBPR principles in biomarker discovery.Results and conclusionsThe limited number of studies in biomarker discovery adopting CBPR principles coupled with their methodological limitations suggests that such applications are feasible but challenging. These studies illustrate three CBPR themes: community assessment, setting global priorities, and collaboration in research design. We propose that further research using participatory principles would be useful in accelerating the pace of discovery and the development of clinically meaningful biomarkers. For this goal to be successful we advocate for increased attention to previously identified conceptual and methodological challenges to participatory approaches in health research, including improving scientific rigor and developing long-term partnerships among stakeholders. (shrink)

This book shows how participatory research can provide tools to overcome the current epistemic and ethical challenges faced by traditional scientific approaches. Ever since Funtowicz and Ravetz proposed the notion of post-normal science, there has been a growing awareness of the limits of a form of knowledge production based only on the traditional scientific peer communities that excludes other social groups affected by its results and applications. The growing uncertainty and complexity posed by socio-ecological issues in the (...) interactions between science, society and decision making has revealed the importance of a social quality control over crucial decisions that rely on scientific research and the necessary democratization of knowledge to tackle sustainability and health concerns. Departing from a reinterpretation of Paulo Freire’s Pedagogy of the Oppressed, this volume shows how participatory research can contribute to reconnect science and society by extending peer communities through the incorporation of different forms of knowledge and different social actors into research projects. To do so, the author presents a critical review of different participatory research approaches, identifying the elements that distinguish a true participatory research from a traditional one, and proposing a taxonomy of the various participatory methodologies. The volume also analyzes a diversity of social practices and understandings that deal with an ecology of knowledge and its systemic characteristics. Moreover, it demonstrates that uncertainties can be integrated in dialogical processes that open possibilities for a myriad of outcomes. Participatory Research in the Post-Normal Age - Unsustainability and Uncertainties to Rethink Paulo Freire's Pedagogy of the Oppressed will be of interest to researchers working with participatory approaches in different fields like health, environmental sciences, and education, as well as to practitioners of action research concerned with scientific dilemmas and counter-hegemonic strategies. (shrink)

BackgroundA requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed.AimsThe aims of this study were to assess the extent to which parents providing consent for children's participation in an observational tuberculosis (TB) research study in India actively participated during the informed consent discussion, and to identify correlates of that participation.MethodsIn an observational (...) cohort study of tuberculosis in infants in South India, field supervisors who were responsible for obtaining informed consent noted down questions asked during the informed consent discussions for 4,382 infants who were enrolled in the study. These questions were post-coded by topic. Bivariate and multivariate analysis was conducted to examine factors associated with asking at least one question during the informed consent process.ResultsIn total, 590 out of 4,382 (13.4%) parents/guardians asked any question during the informed consent process. We found that the likelihood of parents asking questions during the informed consent process was significantly associated with education level of either parent both parents being present, and location.ConclusionsThe findings have implications for planning the informed consent process in a largely rural setting with low levels of literacy. Greater effort needs to be directed towards developing simple participatory communication materials for the informed consent process. Furthermore, including both parents in a discussion about a child's participation in a research study may increase the extent to which consent is truly informed. Finally, continuing efforts need to be made to improve the communication skills of research workers with regard to explaining research processes and putting potential research participants at ease. (shrink)

MOHAMMED SA, WALTERS KL, LAMARR J, EVANS‐CAMPBELL T and FRYBERG S. Nursing Inquiry 2012; 19: 116–127 [Epub ahead of print]Finding middle ground: negotiating university and tribal community interests in community‐based participatory researchCommunity‐based participatory research (CBPR) has been hailed as an alternative approach to one‐sided research endeavors that have traditionally been conducted on communities as opposed to with them. Although CBPR engenders numerous relationship strengths, through its emphasis on co‐sharing, mutual benefit, and (...) class='Hi'>community capacity building, it is often challenging as well. In this article, we describe some of the challenges of implementing CBPR in a research project designed to prevent cardiovascular disease among an indigenous community in the Pacific Northwest of the United States and how we addressed them. Specifically, we highlight the process of collaboratively constructing a Research Protocol/Data Sharing Agreement and qualitative interview guide that addressed the concerns of both university and tribal community constituents. Establishing these two items was a process of negotiation that required: (i) balancing of individual, occupational, research, and community interests; (ii) definition of terminology (e.g., ownership of data); and (iii) extensive consideration of how to best protect research participants. Finding middle ground in CBPR requires research partners to examine and articulate their own assumptions and expectations, and nurture a relationship based on compromise to effectively meet the needs of each group. (shrink)

MENDENHALL TJ, BERGE JM, HARPER P, GREENCROW B, LITTLEWALKER N, WHITEEAGLE S and BROWNOWL S. Nursing Inquiry 2010; 17: 359–372 The Family Education Diabetes Series (FEDS): community‐based participatory research with a midwestern American Indian communityIndigenous people around the globe tend to struggle with poorer health and well‐being than their non‐indigenous counterparts. One area that this is especially evident is in the epidemic of diabetes in North America’s American Indians (AIs) – who evidence higher prevalence rates and (...) concomitant disease‐related complications than any other racial/ethnic group. As researchers and AI communities work together to transcend conventional top‐down, service‐delivery approaches to care, community‐based participatory research is beginning to show promise as a way to partner contemporary biomedical knowledge with the lived‐experience, wisdom, and customs of Indigenous people. This study describes the Family Education Diabetes Series (FEDS) as an example of such effort, and highlights pilot findings assessing its value and impact across key diabetes‐relevant variables. Following 36 intervention participants across baseline, 3‐month, and 6‐month time periods, data show significant improvements in weight, blood pressure, and metabolic control (A1c). Strengths and limitations of this investigation are presented, along with suggestions about how to further advance and empirically test the work across other Indigenous communities. (shrink)

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to (...) each other and engage in substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)

Mobile health research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE platform now features a community forum, a resource (...) library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter. (shrink)

Community Partnered Participatory Research is grounded in the ethical principle of respect for persons participating in the research enterprise. The critical importance of respect for person...

There is increased recognition of the importance of well-designed scholarship on how immigration status and policies impact migrants in the United States, including those who are unauthorized. Some researchers have looked to community-based and participatory methods to develop trust, place migrants’ voices at the forefront, and engage collaboratively in using research as a tool for social change. This article reviews three ethical ambiguities that emerged in the process of a series of participatory action research (...) projects with migrants in the United States, many of whom were unauthorized. Specifically, three themes are discussed: the tension between the human desire to respond to injustices, and the challenges of doing so in ways that recognize one’s privilege and power as an outsider and supports the migrants’ agency and autonomy; the complex definition, explanation, and dimensions of “risk”; and the complexity of using a methodology that prioritizes participants’ collective identity and community in the context of regulations that are designed primarily to protect individuals. (shrink)

Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy collaboratively (...) developed by researchers and study communities in a multicountry study. The study was carried out in two research naïve communities; Gwanda, Zimbabwe and uMkhanyakude, South Africa. The multicentre study was a community based participatory ecohealth multicentre study. A qualitative case study approach was used to explore the CE strategy. Data was collected through Focus Group Discussions, Key Informant Interviews and Direct Observations. Data presented in this paper was collected at three stages of the community engagement process; soon after community entry, soon after sensitisation and during study implementation. Data was analysed through thematic analysis. The communities generally had positive experiences of the CE process. They felt that the continuous solicitation of their advice and preferences enabled them to significantly contribute to shaping the engagement process. Communities also perceived the CE process as having been flexible, and that the researchers had presented an open forum for sharing responsibilities in all decision making processes of the engagement process. This study has demonstrated that research naïve communities can significantly contribute to research processes if they are adequately engaged. The study also showed that if researchers put in maximum effort to demystify the research process, communities become empowered and participate as partners in research. (shrink)

Background Community engagement models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is to document experiences of community members in the CE processes during project implementation. The aim of our study was to explore the experiences of two research naïve communities, regarding a CE strategy (...) collaboratively developed by researchers and study communities in a multicountry study. Methods The study was carried out in two research naïve communities; Gwanda, Zimbabwe and uMkhanyakude, South Africa. The multicentre study was a community based participatory ecohealth multicentre study. A qualitative case study approach was used to explore the CE strategy. Data was collected through Focus Group Discussions, Key Informant Interviews and Direct Observations. Data presented in this paper was collected at three stages of the community engagement process; soon after community entry, soon after sensitisation and during study implementation. Data was analysed through thematic analysis. Results The communities generally had positive experiences of the CE process. They felt that the continuous solicitation of their advice and preferences enabled them to significantly contribute to shaping the engagement process. Communities also perceived the CE process as having been flexible, and that the researchers had presented an open forum for sharing responsibilities in all decision making processes of the engagement process. Conclusions This study has demonstrated that research naïve communities can significantly contribute to research processes if they are adequately engaged. The study also showed that if researchers put in maximum effort to demystify the research process, communities become empowered and participate as partners in research. (shrink)

BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in (...) question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

BackgroundThere have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds on (...) notions of ‘ethics in practice’ by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel ‘real-time research ethics approach’ (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the ‘Addressing Hidden Hunger with Agronomy’. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation.ResultsThe RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants’ ‘lived research experience’. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants’ (TPs) perspectives and experiences.ConclusionsThe use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers ‘ethical mindfulness’ which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels. (shrink)

There is currently a gap between assessment and intervention in the literature concerned with climate change and food. While intervention is local and context dependent, current assessments are usually global and abstract. Available assessments are useful for understanding the scale of the effects of climate change and they are ideal for motivating arguments in favor of mitigation and adaptation. However, adaptation projects need assessments that can provide data to support their efforts. This requires the adoption of a more local and (...) context-sensitive approach to assessments. I suggest that Community-Based Participatory Research has the potential to be a tool for such an approach. (shrink)

BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has (...) been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. (shrink)

This paper explores that the topic of ethics dumping, its causes and potential remedies. In ED, the weaknesses or gaps in ethics policies and systems of lower income countries are intentionally exploited for intellectual or financial gains through research and publishing by higher income countries with a more stringent or complex ethical infrastructure in which such research and publishing practices would not be permitted. Several examples are provided. Possible ED needs to be evaluated before research (...) takes place, and detected prior to publication as an academic paper, because it might lead to a collaborative effort between a wealthier country with restrictive ethical policies and a less wealthy country with more permissive policies. Consequently, if that collaboration ultimately results in an academic paper, there are ethical ramifications of ED to scholarly communication. Institutional review board approval is central to avoid ED-based collaborations. Blind trust and goodwill alone cannot eliminate the exploitation of indigenous or “vulnerable” populations’ intellect and resources. Combining community-based participatory research using clear codes of research conduct and a simple but robust verification system in academic publishing may reduce the risks of ED-based research from being published. (shrink)

Community based participatory research is an effective tool in engaging under-represented minorities in research. To be successful, CBPR must be culturally sensitive, re...

Background Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. (...) Rules on involving the population affected when conducting research have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas? Main body of the abstract More than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies recommended the constitution of a formal organism, the Community Advisory Board, as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used. Conclusions Allocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring, and training researchers. (shrink)

BackgroundThe use of a Community Advisory Board is one method of ensuring community engagement in community based research. To identify the process used to constitute CABs in Zambia, this paper draws on the perspectives of both research team members and CAB members from research groups who used CABs in Lusaka. Enabling and restricting factors impacting on the functioning of the CAB were identified.MethodsAll studies approved by the University of Zambia Bioethics Research Committee (...) from 2008 – 2012 were reviewed to identify those studies that were likely to include a CAB. Eight teams with studies that included a CAB were identified. For each of these studies, consent was obtained to conduct an informal interview with a research team member and to obtain contact details for one CAB member. In total 14 interviews were conducted with 8 research team members and 6 CAB members from 12–30 August 2013.ResultsIdentification of potential CAB members from the community and their participation in developing the terms of reference for CABs was perceived to have contributed to the success of the CAB. Due to the trust that the community had in members of their community the CABs were then in a stronger position to influence community participation in the research. Training of CAB members was identified as a factor that enhanced the functioning of a CAB. Lack of commitment and low literacy levels of CAB members posed a threat to the role of the CAB. Although compensation in the form of a stipend was not provided, CAB members were provided with transport reimbursements for attending meetings.ConclusionsSelection of CAB members from within the community contributed to community confidence in the CAB, enhancing its ability to act as an effective link between study team and community. This contributed positively to the conduct of the study and enhanced community awareness and acceptance of the research. However, establishment of study specific CABs has the potential to compromise CAB independence due to support provided by the research team in the form of transport reimbursements and other forms of support. Consideration should be given to establishing community wide Community Advisory Boards that could function across a range of studies to increase independent objective decision-making. (shrink)

Community-based mental health care providers are increasingly contacted by external researchers for research study recruitment. Unfortunately, many do not possess the resources or personn...

This case study focuses on some of the ethical issues that arise in community-based participatory research, drawing on an example from practice in the UK. It comprises a case example written by a community researcher, followed by two commentaries, which analyse the case and offer different perspectives on the issues raised from the commentators' experiences in Aotearoa New Zealand and Australia. The case example highlights the challenges faced by volunteer action researchers undertaking research interviews (...) and mentoring on sensitive topics in their local neighbourhoods. It raises questions about: the emotional effects of discussing matters of mental health, well-being and money management on both researchers and research participants; how much researchers should disclose about their own lives; and the nature of the support needs of volunteer community researchers. (shrink)

BackgroundHealth service delivery should ensure ethical principles are observed at all levels of healthcare. Working towards this goal requires understanding the ethics-related priorities and concerns in the day-to-day activities among different health practitioners. These practitioners include community health workers (CHWs) who are involved in healthcare delivery in communities in many low-and middle-income countries such as Uganda. In this study, we used photovoice, an innovative community based participatory research method that uses photography, to examine CHWs' (...) perspectives on ethical concerns in their work.MethodsWe explored perspectives of 10 CHWs (5 females and 5 males) on ethical dimensions of their work for 5 months using photovoice in a rural community in Wakiso district, Uganda. As part of the study, we: 1. Oriented CHWs on photovoice research and ethics; 2. Asked CHWs to take photographs of key ethical dimensions of their work; 3. Held monthly meetings to discuss and reflect on the photos; and 4. Disseminated the findings. The discussions from the monthly meetings were audio recorded, transcribed, and emerging data analysed using conventional content analysis with the help of Atlas ti version 6.0.15.ResultsCHWs were aware of and highly concerned about the need to observe ethical principles while carrying out their roles. The ethical principles CHWs were aware of and endeavoured to observe during their work were: maintaining professional integrity and abiding by ethical principles of practice; ethical responsibility in patient care; maintaining confidentiality while handling clients; respect for persons and communities; and enhancing their knowledge and skills for better practice. However, CHWs also identified challenges concerning their observance of ethical principles including: low commitment to their work due to other obligations; availability of some reference materials and guidelines in English yet majority could only read in the local language; and minimal avenues for knowledge enhancement such as trainings.ConclusionsCHWs were aware of and keen to discuss ethical issues in their work. However, there is need to address the challenges they face so as to facilitate observing ethical principles during the course of their work in communities. (shrink)

This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as a model for (...) two follow-up projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

‘Researcher identity’ affects global health research in profound and complex ways. Anthropologists in particular have led the way in portraying the multiple, and sometimes tension-generating, identities that researchers ascribe to themselves, or have ascribed to them, in their places of research. However, the central importance of researcher identity in the ethical conduct of global health research has yet to be fully appreciated. The capacity of researchers to respond effectively to the ethical tensions surrounding their identities is hampered (...) by lack of conceptual clarity, as to the nature and scope of the issues involved. This paper strives to provide some clarification of these ethical tensions by considering researcher identity from the perspective of (1) Guillemin and Heggen's (2009) key distinction between procedural ethics and ethics in practice, and (2) our own distinction between perceptions of identity that are either symmetrical or asymmetrical, with the potential to shift research relationships toward greater or lesser ethical harmony. Discussion of these concepts is supported with ethnographic examples from relevant literature and from our own (United States (US) Government-funded) research in South Africa. A preliminary set of recommendations is provided in an effort to equip researchers with a greater sense of organization and control over the ethics of researcher identity. The paper concludes that the complex construction of researcher identity needs to be central among the ethical concerns of global health researchers, and that the conceptual tools discussed in the paper are a useful starting point for better organizing and acting on these ethical concerns. (shrink)

Context: Participatory arts-based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective: Using the current literature on arts-based health research (...) as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in-practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages. (shrink)

Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in (...) a province-wide community based research project. Through untangling these implications we provide recommendations for reframing how to think about research ethics and strategies for enabling research ethics’ processes to be more responsive to and respectful of community-based research. (shrink)

Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not (...) just to build unidirectional trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems. (shrink)

Background This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.Methods We adapted democratic deliberation, an approach to stakeholder engagement, for use with (...) three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.Results A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.Conclusion The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described. (shrink)

In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have (...) an ambivalent but ultimately productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

Urban communities experiencing marginalization often disproportionately bear the risks and burdens of research and are left out of research ethics governance processes. To address this, many communities have created place-based and community-led research ethics governance initiatives to ensure that community voice is included in discussions surrounding research conduct. Place-based strategies in the Vancouver Downtown Eastside, the Bronx, and the Philadelphia Promise Zone successfully mobilize community perspectives in research (...) class='Hi'>ethics, filling in a significant gap in our current system of institutional research ethics review and oversight. These cases demonstrate that place-based research ethics governance has the potential to account for the community-level risks posed by research projects and to ensure communities receive more felt benefits. Place-based communities sidestep simplistic notions of identity based on single shared features and make space for intersectional analyses and diverse community viewpoints to be considered. Such communities have a unique claim to expertise given their shared experience of place, which grants them the ability to see problematic assumptions embedded in scientific projects as well as community-level concerns within research. Despite this, many marginalized communities are excluded from current research ethics oversight processes. This exclusion demands critical examination and a way forward to facilitate the integration of place-based community oversight strategies within research ethics governance. (shrink)

In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have (...) an ambivalent but ultimately productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

University based academic Research Ethics Boards (REB) face the particularly difficult challenge of trying to achieve representation from a variety of disciplines, methodologies and research interests. Additionally, many are currently facing another decision – whether to have students as REB members or not. At Ryerson University, we are uniquely situated. Without a medical school in which an awareness of the research ethics review process might be grounded, our mainly social science and humanities REB must (...) also educate and foster awareness of the ethics review process throughout the academic community. Our Board has had and continues to have students as active members. While there are challenges to having students as Board members, these are clearly outweighed by the advantages, for both the academic community and the future of ethically sound research in the social sciences and humanities. Moreover, the challenges are often based on misconceptions and can be easily overcome through increased education and understanding of the research ethics review process by the academic community at large. The purpose of this paper is to describe and discuss the experiences, advantages and challenges of having students as REB members. The advantages of having students as REB members include the following: (1) Students are the proposed participants in many of our reviewed protocols and student members may illuminate unique issues of participation. (2) Students are active and highly engaged members of the REB. (3) Having students on the REB enhances awareness of research ethics within the University. (4) Student REB members have an opportunity to mentor other students and provide leadership for both undergraduate and graduate students. (5) Students are more vigorously recruited than faculty members and often apply for student positions with enthusiasm and preparation. (6) In creating an atmosphere of excellence in research, engaging students at the beginning of their research career will help in creating tomorrow’s leaders in research and research ethics. The challenges of having students as REB members include the following: (1) Faculty members may be uneasy regarding the prospect of students reviewing protocols. (2) Faculty members may be concerned about confidentiality and respect with students reviewing faculty research protocols. (3) There may be an increased burden for students who serve as members on an REB. (4) There is concern that students will offer less continuous service to the REB. (5) There is a common misconception that students do not have the experience to carry out ethical reviews. While there are challenges from faculty members and others regarding having students as REB members, these challenges are often based on misconceptions about the nature of the REB work and the ethics review process in general. These challenges are also often based on the misconception of the ethics review process as one of peer review and evaluation, instead of a community-based and inclusive process. Having student members is a long-term strategy for both overcoming the misconceptions of the REB as a “necessary evil” and for fostering an awareness of the imperative for ethically sound research in the social sciences and humanities. (shrink)

We describe how a Community-Based Participatory Research (CBPR) process was used to develop a means of discussing end-of-life care needs of Deaf seniors. This process identified a variety of communication issues to be addressed in working with this special population. We overview the unique linguistic and cultural characteristics of this community and their implications for working with Deaf individuals to provide information for making informed decisions about end-of-life care, including completion of health care directives. Our (...) research and our work with members of the Deaf community strongly show that communication and presentation of information should be in American Sign Language, the language of Deaf citizens. (shrink)