Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ (...) and middle‐income country (LMIC) community members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Biomedical research is increasingly globalized with ever more research conducted in low and middle-income countries. This trend raises a host of ethical concerns and critiques. While community engagement has been proposed as an ethically important practice for global biomedical research, there is no agreement about what these practices contribute to the ethics of research, or when they are needed.

One way of conceptualizing community engaged teaching is as a mode of teaching that directly foregrounds engaging communities who are experiencing particular social realities that are theorized and discussed in classroom settings. Tracing the trajectory of community engaged teaching from the pedagogical paradigm of civil rights era Freedom Schools to contemporary manifestations of their legacy, the author offers two narrative accounts. The first is an account of the emergence of Freedom Schools as quintessential examples of community engaged (...) teaching that exemplify the character and aims of public philosophy as social praxis. The second is an illustrative account of the lessons to be drawn from the Freedom Schools by all who aspire to pursue community engaged teaching in a manner that extends their legacy. Ironically, the racist deployment of the system of education served as the impetus for what took shape as the Freedom Summer's emphasis on radical, liberation‐oriented, and mutually transformative modes of community‐engaged teaching. (shrink)

Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how (...) community engagement can contribute to ethical global health research by complementing existing established requirements such as informed consent and independent ethics review. The overarching and interlinked areas are respecting individuals, communities and stakeholders; building trust and social relationships; determining appropriate benefits; minimizing risks, burdens and exploitation; supporting the consent process; understanding vulnerabilities and researcher obligations; gaining permissions, approvals and building legitimacy and achieving recruitment and retention targets. (shrink)

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these (...) knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these (...) knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these (...) knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these (...) knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

There are increasing calls internationally for the development of regulation and policies related to the rapidly growing nanotechnologies sector. As part of the process of policy formation, it is widely accepted that deliberative community engagement processes should be included, enabling publics to have a say about nanotechnologies, expressing their hopes and fears, issues and concerns, and that these will be considered as part of the policy process. The Australian Federal and State governments have demonstrated a commitment to these (...) ideals, undertaking a number of public engagement activities in recent years. However, despite promises that these community engagement activities will enable policy makers to identify complex and contested community attitudes, and that these will be included as part of the policy making process, a closer look at Australia’s engagement activities reveals something quite different. Through an analysis of a number of Australia’s nano-engagement activities, this paper demonstrates the limits of public engagement related to the development of nanotechnology related policies and regulation in Australia. Our analysis reveals the extent to which industry interests have captured policy makers and regulators, dissenting voices have been excluded from engagement processes, and engagement processes have not connected with actual policy making activities. Reflecting on these limits, this paper concludes with recommendations for improving public engagement processes related to nanotechnologies in Australia. (shrink)

Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches (...) to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.Conclusions Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. (shrink)

BackgroundCommunity engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate.DiscussionWe describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which (...) set the stage for similar work in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research.SummaryThere is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings. (shrink)

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal (...) for CE in global health research. It contends that, over time, CE can build the bases of solidaristic relationships—moral imagination, recognition, understanding, empathy—between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed. (shrink)

New techniques for the genetic modification of organisms are creating new strategies for addressing persistent public health challenges. For example, the company Oxitec has conducted field trials internationally—and has attempted to conduct field trials in the United States—of a genetically modified mosquito that can be used to control dengue, Zika, and some other mosquito-borne diseases. In 2016, a report commissioned by the National Academies of Sciences, Engineering, and Medicine discussed the potential benefits and risks of another strategy, using gene drives. (...) Driving a desired genotype through a population of wild animals or insects could lead to irreversible genetic modification of an entire species. The NASEM report recommends community, stakeholder, and public engagement about potential uses of the technology, and it argues that the engagement should occur as research advances, well before gene drives are deployed. Yet what “engagement” means in practice is unclear. This article seeks clarity on this problem by offering a justification for community engagement and drawing out implications of this argument for the implementation and desired outcomes of community engagement. Community engagement is essential when it comes to research that would release genetically modified insects or animals into the environment. By contrast, obtaining informed consent from people who live near such a proposed field trial is neither necessary nor sufficient. Drawing on the epistemic and moral arguments for deliberative democracy, I propose two discrete mechanisms of community engagement: community advisory boards and deliberative forums, neither of which has been systematically incorporated into research governance. The proposed mechanisms would engender respect for persons who live near field trials, even when the results of deliberation override some individuals’ preferences. Community engagement foregrounds the community in our thinking about humans’ relationship to nature, and it implies that deciding to release genetically modified insects or animals into the wild ought to be a collective decision, not one made by product developers, policy-makers, private companies, research funders, or scientists alone. (shrink)

Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.

Effective community engagement is an important legal, ethical, and practical prerequisite for conducting field trials of genetically modified mosquitoes, because these studies can substantially impact communities and it is usually not possible to obtain informed consent from each community member. Researchers who are planning to conduct field trials should develop a robust community engagement strategy that meets widely recognized standards for seeking approval from the affected population, such as timeliness, consent, information sharing, transparency, understanding, responsiveness, (...) mutual understanding, inclusiveness, and respectfulness. Additional research is needed on the effectiveness of different methods of engaging communities in field trials of genetically modified mosquitoes and how to respond to public opposition to genetically modified organisms. For research programs involving the genetic modification of disease vectors to move forward, they must have public acceptance and support, which cannot be achieved without effective community engagement. (shrink)

In articulating the protection-inclusion dilemma, Friesen et al. (2023) identify an important issue facing institutional review boards (IRBs) and elucidate historical factors contributing to its de...

BackgroundCommunity engagement in research is valuable for instrumental and intrinsic reasons. Despite existing guidance on how to ensure meaningful CE, much of what it takes to achieve this goal differs across settings. Considering the emerging trend towards mandating CE in many research studies, this study aimed at documenting how CE is conceptualized and implemented, and then providing context-specific guidance on how researchers and research regulators in Uganda could think about and manage CE in research.MethodsWe conducted qualitative interviews and focus (...) group discussions involving forty-one respondents who were experienced in HIV/aids biomedical research involving CE. Thirty-eight of these were directly or indirectly associated with Uganda’s leading research institution in the field of HIV/aids. They included Principal Investigators, Community Liaisons Officers, Research Ethics Committee members and Community Advisory Board Members. Three respondents were from Uganda National Council for Science and Technology. Data were collected between August 2019 and August 2020, using audio-taped focus group discussions and key informant interviews, transcribed and analyzed manually to generate themes and subthemes.ResultsThree major themes emerged: goals or value of CE; the means of CE, and, the evaluation of CE. Goals or value of CE generated four subthemes representing the overarching goals of CE: Promote communities’ agency; Generate and sustain trust; Protect and promote communities’ rights and interests; and, Help studies optimize participation in the form of enrolment and retention of participants. What usually comes under the nomenclatures of methods, strategies, and approaches of CE, such as town-hall meetings, sports events, drama, and the like, should simply be understood as the means of CE, and it is not desirable to hold pre-conceived and fixed ideas about the best means to conduct CE in research since a lot depend on the context. Finally, the study found that despite CE’s critical importance, which suggests the need to track and evaluate it, CE is currently intermittently evaluated, and for inadequate motivations.ConclusionsExisting guidance on how to conduct robust CE in research is no substitute for creativity, flexibility, and reflexivity on the part of both researchers and research regulators. (shrink)

Background Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. Aim To assess the perspectives of genetics and genomics researchers (...) in Uganda on CE in GGR. Method A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. Study findings Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR. Conclusion GGR was characterized by special issues that require special CE considerations for such research. (shrink)

In In their article Morain and Largent suggest looking “beyond the investigator-participant dyad” to understand the ethical obligations in embedded research using Electronic Health Record (EHR) dat...

This work addresses limitations in current approaches to rhetorical historiography and provides fresh philosophical ground that responds to these limitations. By integrating philosophical ideas, a philosophy of communicative engagement is formed and illustrated with descriptions of three women’s successful efforts to change the face of society.

According to the Economic Survey of India, 2012–2013, the real estate sector contributed 5.9 % of the India’s total Gross Domestic Product in the Financial Year 2011–2012, while remaining the second largest employment generator after agriculture in India. The urban population in India is projected to touch 600 million by 2030, from 377 million in 2011, thereby fuelling a housing shortage of around 26 million. However, the perception of Construction industry, like other sectors of the economy, is that of creating (...) “human habitat in a manner generally focussed on profitability without consideration of its long-term impacts.” Under such circumstances, Tata Housing Development Company Limited, a closely held Public Limited Company under 99.86 % subsidiary of Tata Sons, is the first Indian real estate company to have reported the triple bottom-line Global Reporting Initiative G4 Sustainability Reporting Guidelines in its Sustainability Report FY 2013–2014. THDCL aims to volunteer its resources to the extent it can reasonably afford, to sustain the environment and to improve the quality of life of the people of the area in which it operates. This Situational Case Study, targeted towards management students and practitioners, and social and developmental workers in the areas of Corporate Governance, Strategic Management, Business Environment, Business Policy and Community Welfare, aims to identify the community engagement model of THDCL; analyse it in terms of its implementation and impact; and initiate discussion about the role of strategic partnerships under Corporate Social Responsibility in an emerging economy. This work may be used for developmental related workshops/training programmes for students and working professionals of innovation, CSR, sustainability, social and developmental sectors and shared, among others, in various Chambers of Commerce and Academic forums on the same. It is, however, not intended to serve as an endorsement, source of data or illustration of effective or ineffective management. Certain names and information could have been disguised for confidentiality. (shrink)

Precollege philosophy programs provide young people with alternative spaces to ask questions and develop critical perspectives on their experiences, but neoliberal school management practices make the creation of these spaces increasingly difficult. Relying on my own experience as an instructor of a community-engaged course that focuses on precollege philosophy, I investigate how college and university professors and students can create philosophical learning opportunities for high school students without participating in the culture of volunteerism demanded by neoliberal logic. I argue (...) that the work my university students perform in the community-engaged course is a win-win that undermines neoliberalism’s assault on education by providing high school students with a valuable opportunity while helping my students achieve important skills. (shrink)

In his target article, Ismaili M’hamdi advocates for perfectionist public health policymaking, which entails fostering relevant and objectively valuable public health-related capabilities wh...

Higher Education Institutions (HEIs) stand at the junction of increasing social and economic challenges in a pandemic era. The focus of this study is to substantiate to an extent what CE implies and what HEIs can and should do. A probing question is whether HEIs can effectively respond to needs identified within the communities in which they operate? The purpose is to interrogate how CE by HEIs can shape and be shaped by its role-players. A qualitative literature study and an (...) interpretivistic paradigm were utilised in this study to deliberate upon the debate on Community Engagement (CE) in Higher Education Institutions (HEIs) in South Africa. It is a global truth that a university has an important role to play in responding to a range of societal needs. In South African universities, this is also the case, but the notion and practice of community engagement by Higher Education Institutions (HEIs) in general, is a persistent transformational requirement. What is meant by the term Community Engagement (CE) may differ from institution to institution but broadly speaking it relates to how an institution interacts with a community in which it operates in ways that result in a win-win situation for all parties involved and positively influence the quality of life within society in general. Viewed from a South African Higher Education milieu, it is clear that CE is an instrument through which transformation is supported through social responsiveness and it is thus in essence far more than mere community service or outreach as in most universities abroad. Having CE engaged universities is vital for a strong social and economic South Africa. CEs role is then to promote skills and knowledge to those alienated during the apartheid era. For a higher education institution, the benefits accrued would most likely be in inter alia joint projects, research initiatives and teaching opportunities to help redress past evils. Although community engagement often brings with it a range of challenges, it remains a fundamental role required of HEIs in South Africa and beyond. This article thus presents a brief overview on inter-alia, the direction and theoretical development of CE practices and suggests some possible aspects to consider applying to CE. A desktop literature review methodology and an interpretivistic paradigm were used in this brief study. Keywords: community engagement, higher education, South Africa, transformation, ethical duty. (shrink)

It has been suggested that community advisory boards can play a role in minimising exploitation in international research. To get a better idea of what this requires and whether it might be achievable, the paper first describes core elements that we suggest must be in place for a CAB to reduce the potential for exploitation. The paper then examines a CAB established by the Shoklo Malaria Research Unit under conditions common in resource-poor settings – namely, where individuals join with (...) a very limited understanding of disease and medical research and where an existing organisational structure is not relied upon to serve as the CAB. Using the Tak Province Border Community Ethics Advisory Board as a case study, we assess the extent to which it might be able to take on a role minimising exploitation were it to decide to do so. We investigate whether, after two years in operation, T-CAB is capable of assessing clinical trials for exploitative features and addressing those found to have them. The findings show that, although T-CAB members have gained knowledge and developed capacities that are foundational for one-day taking on a role to reduce exploitation, their ability to critically evaluate studies for the presence of exploitative elements has not yet been strongly demonstrated. In light of this example, we argue that CABs may not be able to perform such a role for a number of years after initial formation, making it an unsuitable responsibility for many short-term CABs. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the (...) role of field workers in 'doing ethics' on the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

There is a need for empirically based research on social and ethical challenges related to informed consent processes, particularly in studies focusing on adolescent sexual and reproductive health. In a pilot study of a school-based pregnancy prevention intervention in rural Zambia, the majority of the guardians who were asked to consent to their daughters’ participation, refused. In this paper we explore the reasons behind the low participation in the pilot with particular attention to challenges related to the community (...) class='Hi'>engagement and informed consent process. The pilot was implemented in two schools and examined the acceptability of a package of interventions including economic support to families to keep their girls in school, pocket money for girls, youth club meetings on reproductive health, and community meetings to sensitize the community. Focus group discussions were conducted with girls who participated in the pilot, boys in their class and with parents. Individual semi-structured interviews were conducted with teachers, peer educators and community health workers involved in the coordination of the intervention as well as with religious and traditional leaders. Data were analyzed through thematic analysis. The findings indicate that inadequate use of recognized community communication channels during the community engagement process and dissemination of information about the pilot resulted in limited understanding of the pilot concept by the community. This surfaced through uncertainty and fear that the intervention may result in loss of control over daughters, worries about why money was provided unconditionally to girls, and suspicion of links to satanism. The sense of insecurity appeared to be exacerbated by low literacy levels, poverty, fear of loss of bride wealth, perceived disregard for local perceptions of social status, and scanty trust in the actors implementing the pilot. Inadequate use of locally appropriate channels in the dissemination of information created room for interpretation and facilitated development of mistrust, undermining the conditions for community engagement and actual informed consent. A key lesson learnt is the importance of taking seriously the complexity of local values and structures that may impact people’s capability to consent or not consent to a study in an informed manner. (shrink)

Addressing many social challenges requires both structural and behavioral change. The binary of an i- and s-frame obscures how behavioral science can help foster bottom-up collective action. Adopting a community-frame perspective moves toward a more integrative view of how social change emerges, and how it might be promoted by policymakers and publics in service of addressing challenges like climate change.

Lyons and Whelan provide a useful list of recommendations as to how community engagement on nanotechnology could be improved, which very few people working in community engagement could disagree with. However, as the conclusions of any study are dependent on the data obtained, if more data had been obtained and analysed then different conclusions might have been reached. Addressing the key issues in the paper and providing more data, also allows an opportunity to expand on current (...) issues relating to community engagement on nanotechnology and the challenges it provides for practitioners. (shrink)

Community engagement in research, including public health related research, is acknowledged as an ethical imperative. While medical care and public health action take priority over research during infectious disease outbreaks, research is still required in order to learn from epidemic responses. The World Health Organisation developed a guide for community engagement during infectious disease epidemics called the Good Participatory Practice for Trials of Emerging (and Re‐emerging) Pathogens that are Likely to Cause Severe Outbreaks in the Near (...) Future and for which Few or No Medical Counter‐Measures Exist (GPP‐EP). This paper identified priorities for community engagement for research conducted during infectious disease outbreaks drawing on discussions held with a purposive sample of bioethicists, social scientists, researchers, policy makers and laypersons who work with ethics committees in West Africa. These perspectives were considered in the light of the GPP‐EP, which adds further depth and dimension to discussions on community engagement frameworks. It concludes that there is no presumptive justification for the exclusion of communities in the design, implementation and monitoring of clinical trials conducted during an infectious disease outbreak. Engagement that facilitates collaboration rather than partnership between researchers and the community during epidemics is acceptable. (shrink)

There is limited guidance on how to assess the ethical acceptability of research risks that extend beyond research participants to third parties (or “research bystanders”). Community or stakeholder engagement has been proposed as one way to address potential harms to community members, including bystanders. Despite widespread agreement on the importance of community engagement in biomedical research, this umbrella term includes many different goals and approaches, agreement on which is ethically required or recommended for a particular (...) context. We analyse the case of a potential Zika virus human challenge trial to assess whether and how community engagement can help promote the ethical acceptability of research posing risks to bystanders. We conclude that, in addition to having intrinsic value, community engagement can improve the identification of bystander risks, effective approaches to minimizing them, and transparency about bystander risks for host communities. (shrink)

Several scholars have claimed that small-scale agriculture in which farmers sell goods to the local market has the potential to strengthen social ties and a sense of community, a phenomenon referred to as “civic agriculture.” Proponents see promise in the increase in the number of community supported agriculture programs, farmers markets, and other locally orientated distribution systems as well as the growing interest among consumers for buying locally produced goods. Yet others have suggested that these novel or reborn (...) distribution mechanisms are still primarily means of instrumental economic exchange and that optimistic characterizations of a renewed sense of community emerging from these practices are unfounded. This study provides an empirical assessment of the extent to which these community-based agriculture markets are associated with connection to community, volunteerism, and civic and political activities. In order to assess the relationship between civic agriculture and community engagement, we surveyed over 1,300 people in the Mid-Hudson region of New York State. The study design includes “civic agriculture participants” as the unit of analysis, defined as CSA farm members, shoppers at independent health food stores, and farmers market patrons. For comparison, a telephone survey of randomly selected residents of the region’s general population was also conducted. Unlike studies that focus solely on the perceptions of certain civic agriculture participants, by comparing the perceptions and behaviors of those engaged in a range of civic agriculture practices, we are able to identify the effects of different forms of participation. The results demonstrate higher levels of voluntarism and engagement in local politics among civic agriculture participants relative to the general population. In addition, we found variation among those engaged in different forms of civic agriculture, with those immersed in more socially embedded forms of exchange demonstrating greater community and political involvement. These findings lend empirical support to the civic agriculture thesis. (shrink)

Authentic community engagement in Indigenous communities insists on the exercise of tribal sovereignty over research. American Indian and Alaska Native tribes are sovereign Nations with uni...

Pratt et al. (2020) tackle a seeming lack of consensus about the ethical goals of community engagement (CE) in global health research. Their paper “identifies an additional or complementary role fo...

The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...) The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged. (shrink)

The development of the CRISPR/Cas9 gene editing system has generated new possibilities for the use of gene drive constructs to reduce or suppress mosquito populations to levels that do not support disease transmission. Despite this prospect, social resistance to genetically modified organisms remains high. Gene drive open field research thus raises important questions regarding what is owed to those who may not consent to such research, or those could be affected by the proposed research, but whose consent is not solicited. (...) The precise circumstances under which informed consent must be obtained, and from whom, requires careful consideration. Furthermore, appropriate engagement processes should be central to any introduction of genetically modified mosquitos in proposed target settings. In this work, international guidance documents on informed consent and engagement are reviewed and applied to the genetically modified mosquito research context. Five analogous research endeavours that involve area-wide / open field experiments are reviewed. The approach of each in respect to the solicitation of individual informed consent and community engagement are highlighted. While the solicitation of individual informed consent in host settings of gene drive field trials may not be possible or feasible in some instances, local community and stakeholder engagement will be key to building trust towards the proposed conduct of such research. In this regard, the approaches taken by investigators and sponsors of political science field research and weather modification field research should be avoided. Rather, proponents of gene drive field research should look to the Eliminate Dengue field trials, cluster randomised trials, and pragmatic clinical trials for guidance regarding how the solicitation of individual informed consent of host communities ought to be managed, and how these communities ought to be engaged. (shrink)

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. The move toward community engaged research (CEnR) necessitates the inclusion of diverse perspectives to address complex problems. Using a relationship paradigm, CEnR reframes the context, considerations, practical steps, and outcomes of research.

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. However, concerns about the relevance and applicability of the processes or outcomes of such research have led to calls for greater community engagement in the research process. As such, there has been a shift in emphasis from simply recruiting research participants from community settings to engaging community members more broadly in all aspects of the research process. The move (...) toward community engaged research is in part driven by the recognition that inclusion of diverse perspectives in multidisciplinary teams is essential to addressing complex problems. Investigators have come to recognize the inherent value of engaging community members as collaborators in multidisciplinary teams that are conducting research on issues of concern to communities. The insider perspective from community members is now recognized as essential in designing effective and well-received recruitment strategies, culturally appropriate measures, and identifying meaningful and broad-reaching venues for dissemination. (shrink)

This paper focuses on some of the ethical issues which may arise when conducting research in the context of homelessness. These issues are considered from the viewpoints of researchers, research coordinators and interviewers, drawing from their extensive real world experience. In addition to negotiating the complex context of homelessness, community-based homelessness researchers need to address a number of ethical issues in research conception, design, implementation and dissemination. Although these issues are commonly considered in community-engaged research, research with people (...) who are homeless may raise exceptional challenges. Such challenges include determining the nature of informed consent; protecting research participants and researchers, and determining appropriate compensation for participation. Understanding the context of homelessness to conduct ethical research will require sharing information and joint decision-making, processes that must include members of communities within which the research participants live. Furthermore, researchers should be sensitive to the changing context of homelessness, and vigilant for new ethical challenges. (shrink)

In 1973, Rittel and Webber coined the term ‘wicked problems’, which they viewed as pervasive in the context of social and policy planning.1 Wicked problems have 10 defining characteristics: they are not amenable to definitive formulation; it is not obvious when they have been solved; solutions are not true or false, but good or bad; there is no immediate, or ultimate, test of a solution; every implemented solution is consequential, it leaves traces that cannot be undone; there are no criteria (...) to prove that all potential solutions have been identified and considered; every wicked problem is essentially unique; every wicked problem can be considered to be a symptom of another problem; a wicked problem can be explained in numerous ways and the choice of explanation determines what will count as a solution and the actors are liable for the consequences of the actions they generate.1 One needs only a passing familiarity with the history of HIV prevention research, and with the intellectual traditions of research ethics, to appreciate that the perils and opportunities arising from proposals to conduct research with people who inject drugs in some of the most precarious social and political circumstances around the world and the challenges associated with implementing the findings satisfy Rittel's and Webber's criteria for ‘wicked problems’. HIV prevention research has contributed important new knowledge about the feasibility, efficacy or relative efficacy of various prevention strategies in a variety of contexts around the world. But the pathways and timelines for how this knowledge has contributed to improvements in public health practice and/or the establishment of policies that ensure unfettered access to appropriate healthcare services for PWID are less clear and decidedly non-linear. One account of the transition from trial to policy …. (shrink)