Despite the proliferation of studies on corporate social responsibility (CSR), there is a lack of consensus and a cardinal methodological base for research on the quality of CSR communication. Over the decades, studies in this space have remained conflicting, unintegrated, and sometimes overlapping. Drawing on semiotics—a linguistic-based theoretical and analytical tool, our article explores an alternative perspective to evaluating the quality and reliability of sustainability reports. Our article advances CSR communication research by introducing a theoretical-cum-methodological perspective which provides (...) unique insights into how to evaluate the quality of CSR communication. Particularly, we illustrate the application of our proposed methodology on selected U.K. FTSE 100 companies. Our two-phased analysis employed the Greimas Canonical Narrative Schema and the Semiotic Square of Veridiction in drawing meanings from selected sustainability/csr reports. In addition, we present a distinctive CSR report quality model capable of guiding policy makers and firms in designing sustainability/csr reporting standards. (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 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)

This volume provides a comprehensive account of Wilhelm Röpke as a liberal political economist and social philosopher. Wilhelm Röpke was a key protagonist of transatlantic neoliberalism, a prominent public intellectual and a gifted international networker. As an original thinker, he always positioned himself at the interface between political economy and social philosophy, as well as between liberalism and conservatism. Röpke’s endeavors to combine these elements into a coherent whole, as well as his embeddedness in European and American intellectual networks of (...) liberal and conservative thinkers, are a central theme throughout the book. The volume includes papers by international experts from a conference in Geneva on the occasion of the 50th anniversary of Röpke’s passing. The first part focuses on new biographical insights into his exile years in Istanbul and Geneva, while the second part discusses his business cycle theory in the context of the Great Depression, and the third part elaborates on his multifaceted social philosophy. Wilhelm Röpke was among the most important thinkers within the classical liberal revival post-WWII, with intriguing tensions between liberalism and conservatism. A highly recommended volume. –– Peter J. Boettke, 2016-2018 President of the Mont Pèlerin Society and Professor of Economics and Philosophy, George Mason University This important collection of papers provides an in-depth assessment of Wilhelm Röpke’s contributions, placing him in the context of his time. A fine contribution. –– Bruce J. Caldwell, Director of the Center for the History of Political Economy and Research Professor of Economics, Duke University. (shrink)

This article discusses the role of communication research in the Cold War, moving from a US-centered to a comparative-transnational point of view. It examines research on prop-aganda and mass communication in the United States and the Soviet Union, focusing not only on the similarities and differences, but also on mutual perceptions and transnational entanglements. In both countries, communication scientists conducted their research with its benefits for propaganda practitioners and waging the Cold War in mind. It has been (...) suggested that after an initial period of close cooperation between politics and communication science, early expectations of the potential of systematic research for controlling the hearts and minds of people through propaganda started to fade. On both sides of the Iron Curtain, communication research eventually became a ‘normal’ scholarly discipline. (shrink)

This monograph examines the past, present, and potential relationship between American pragmatism and communication research. The contributors provide a bridge between communication studies and philosophy, subjects often developed somewhat in isolation from each other. Addressing topics, such as qualitative and quantitative research, ethics, media research, and feminist studies, the chapters in this volume: *discuss how a pragmatic, Darwinian approach to inquiry has guided and might further guide communication research; *advocate a functional view of communication, based on (...) Dewey's mature notion of transaction; *articulate a pragmatist's aesthetics and connect it to Deweyan democracy; *discuss the similarities and differences between Dewey's notion of inquiry and the philosophical hermeneutics of Hans-Georg Gadamer; *apply accommodation theory, linked to symbolic interactionism and more generally to the social behaviorism of George H. Mead and his followers, to media research; *interpret media-effects evidence in light of pragmatist ideas about inquiry; and *argue that pragmatism theorizes about despair and life's sense of the tragic. This book is written to be readily accessible to students and professional academics within and outside the field of communication studies without extensive training in specialized areas of communication study. (shrink)

Millum and Bromwich’s excellent article provides both conceptual and practical rationale for reexamining the fundamentals of the informed consent process for research and clinical interventi...

The science, technology, engineering, and mathematics (STEM) classroom is an ideal site for implementing community-based ethics resources. Doing so fulfills programmatic requirements in the social reality of science and demonstrates increased applicability of science concepts to issues of immediate community concern. This chapter elaborates on the Re-envisioning Ethics Access and Community Humanities (REACH) initiative at Salisbury University, its community research methodology, and the implementation of community-sourced ethics cases in the biology classroom. Preliminary student and instructor feedback is summarized. As (...) opposed to using more traditional ethics resources, such as cases sourced from the national media or case-based ethics readers, the use of community-based cases demonstrates promise in increasing student engagement in discussion, the applicability of course content, and a sense of the social importance of science in addressing contemporary ethics issues. We end with future implications of this pedagogical approach for revising ethics instruction in the STEM classroom. (shrink)

Mass communication researchers face ethical dilemmas during the course of their work, and those dilemmas are more than the trilogy of informed consent, deception, and privacy. As part of a project for the Association for Education in Journalism and Mass Communication, we surveyed members of the association's Communication Theory and Methodology Division. Researchers, in an open?ended question at the end of the survey, said their concerns about ethics in research ranged from journal publication practices to proprietary research.

This study employs online archival and interview methods to understand how people on X (formerly Twitter) interpret and construct the ‘No Gree for Anybody’ tweets as a form of digital protest. ‘No Gree for Anybody,’ translating to ‘Do not compromise for anyone’ in Nigerian Pidgin English, became a sort of national anthem on social media, especially on Twitter, amid the socioeconomic challenges in Nigeria. The adoption of this slogan, despite concerns from the Nigerian Police, underscores its influential role as an (...) alternative protest form advocating systemic reform and confronting entrenched power structures. The qualitative data analysis constructed four key themes: Language and Identity, Digital Protest/Mobilization and Collective Identity, Multiple Symbolism of Defiance, and Protests Continuum in Nigeria’s socio-political landscape. These themes provide a nuanced understanding of ‘No Gree for Anybody’ and how its subtleness and non-episodic features shape digital activism and socio-political discourse in Nigeria, highlighting its position in contemporary protest dynamics. (shrink)

Emotion and affect play a central role in persuasion, decision-making, and human behavior. Because of ongoing environmental crises, there is a strong need to better understand how emotions shape selection, attention, processing, and effects of environmental communication. Here, I highlight three main areas that contain challenges and opportunities for building a synergistic relationship between the affective sciences and research on strategic environmental communication: (a) identifying the causal effects of emotions in environmental communication; (b) the role of emotions in the (...) durability of environmental messaging effects; and (c) how closing the gap between the laboratory and the field can generate innovative research and more applicable inferences. (shrink)

The paper addresses severalethical issues in online communication researchin light of digital ontology as well as theepistemological questions raised by theblurring boundary between fact and theory inthis field. The concept of ontology is used ina Heideggerian sense as related to the humancapacity of world construction on the basis ofthe givenness of our being-in-the-world.Ethical dilemmas of Internet research thusarise from the tension between bodily existenceand the proper object of research, i.e., onlineexistence. The following issues are beingconsidered: online identity, online (...) language,online consent and confidentiality. We alsoargue that research ethics in the US followsthe utilitarian tradition, while Europeanresearchers are deontologically oriented. Aguideline of best practice in online researchethics is proposed. (shrink)

This essay examines the contemporary approaches to systems theory, the strengths and limitations of these approaches, and how communication researchers can apply them creatively. It points out that using system approaches requires communication scholars to study the mutual interaction of both information inputs and matter/energy inputs. Overloads of these inputs coupled with storage problems could engender positive feedback loops and move the system away from the linear region of stability toward the edge of chaos. It could then self-organize as a (...) more complex system in a new phase space of its trajectory. This complexity approach could be used to trace the trajectory of the global mass communication system or to conduct empirical research on all or any of the information-processing subsystems within the eight hierarchical levels of nested systems ranging from cell to supranational systems. Although systems thinking is writ large in the onto-cosmology of Eastern philosophies, its epistemological and methodological refinements did not occur until quantum physics challenged the ‘atomism’ of the dominant Newtonian-Cartesian model. (shrink)

Feminist research is inherently linked to action, since it integrates scholarship with activism and seeks a fundamental social change. As such, it studies communciation processes as action-oriented on two complimentary levels: action within – the perpsective of meanings created as a result of active negotiations with texts by specifically socially-situated audiences; and social action – the perspective that understandings of human communication should be applied for the improvement of social life. Such a perspective emphasizes subjectivity as the central form (...) of knowledge-making and studying, it encourages reserachers' reflexivity upon their personal, social and political positioning, it prioritizes interdisciplinary and multidimensional cooperation, it encourages non-hiereachical and empowering researcher-researchee relationships, and redefines a host of ethical research-related issues. The result is a series of challenges to normative assumptions about conducting and presenting science, and about the value of social knowledge and its emancipatory implications. A variety of case-studies applying feminist perspectives to communication research will be presented to illustrate these issues from the areas of news, advertising, children's culture, media texts and construction of gender identities, and the use of new technologies. The implications of the feminist approach to the redifinition of communication studies, and its possible contribution to bridging theory and practice, research and social change, academy and everyday life, will be highlighted. (shrink)

The following article deals with intercultural communication research as a subfield of communication studies. The broader aim is to contribute to the history as well as to the systematization of the field of intercultural communication research. The author is mapping three very different national research communities: Germany, France and the US. The main question is: Why, in each of the countries under comparison, do communication studies deal so differently with the subject of intercultural communication as a (...) class='Hi'>research topic and/or field? The methodology is comparative and focuses on the differences and similarities in the three national communities of communication studies and research. Both the German and the French communication researchers look closely at US research. It appears that research traditions and general trends of mainstreaming in communication studies are highly influential as gatekeepers or barriers to intercultural communication research as a subfield of communication studies. (shrink)

Community leaders in Colombia have historically suffered processes of microaggressions and intimidation that threaten the free exercise of their voice in the processes of production of knowledge and in the participation of the planning of their territories. In this article, we explore the case study of the Network of Community Researchers (NCR), also known in Spanish as Red de Investigadores Comunitarios, promoted by the University of Antioquia, Colombia. The NCR is a commitment to the co-production of knowledge about human security (...) from below between community researchers and academics. This article analyses the contribution of the NCR to the human security of Medellin and a specific collection of capabilities for epistemic liberation of community researchers: the capability to be recognised as a producer of valid knowledge, to do through communicative openness, to learn from collective knowledge and to transform through collective action. The expansion of these four capabilities evidence processes of resistance and hermeneutic insurrection of some community leaders and activists who participate in the NCR. The analysis shows the contribution of the NCR to facilitate and generate a safe space in which community researchers communicate knowledge and practices and share experiences, risks, struggles, fears and collective dreams of transformation. (shrink)

Multimodal communication research focuses on how different means of signalling coordinate to communicate effectively. This line of research is traditionally influenced by fields such as cognitive and neuroscience, human-computer interaction, and linguistics. With new technologies becoming available in fields such as natural language processing and computer vision, the field can increasingly avail itself of new ways of analyzing and understanding multimodal communication. As a result, there is a general hope that multimodal research may be at the “precipice (...) of greatness” due to technological advances in computer science and resulting extended empirical coverage. However, for this to come about there must be sufficient guidance on key (theoretical) needs of innovation in the field of multimodal communication. Absent such guidance, the research focus of computer scientists might increasingly diverge from crucial issues in multimodal communication. With this paper, we want to further promote interaction between these fields, which may enormously benefit both communities. The multimodal research community (represented here by a consortium of researchers from the Visual Communication [ViCom] Priority Programme) can engage in the innovation by clearly stating which technological tools are needed to make progress in the field of multimodal communication. In this article, we try to facilitate the establishment of a much needed common ground on feasible expectations (e.g., in terms of terminology and measures to be able to train machine learning algorithms) and to critically reflect possibly idle hopes for technical advances, informed by recent successes and challenges in computer science, social signal processing, and related domains. (shrink)

When conducting research on sensitive topics, it is challenging to use new methods of data collection given the apprehensions of Institutional Review Boards (IRBs). This is especially worrying because sensitive topics of research often require novel approaches. In this article a brief personal history of navigating the IRB process for conducting sex communication research is presented, along with data from a survey that tested the assumptions long held by many IRBs. Results support some of the assumptions IRBs (...) hold about sex communication research, but do not support some other assumptions. (shrink)

In the rapidly evolving landscape of multimodal communication research, this paper explores the transformative role of machine learning (ML), particularly using multimodal large language models, in tracking, augmenting, annotating, and analyzing multimodal data. Building upon the foundations laid in our previous work, we explore the capabilities that have emerged over the past years. The integration of ML allows researchers to gain richer insights from multimodal data, enabling a deeper understanding of human (and non-human) communication across modalities. In particular, augmentation (...) methods have become indispensable because they facilitate the synthesis of multimodal data and further increase the diversity and richness of training datasets. In addition, ML-based tools have accelerated annotation processes, reducing human effort while improving accuracy. Continued advances in ML and the proliferation of more powerful models suggest even more sophisticated analyses of multimodal communication, e.g., through models like ChatGPT, which can now “understand” images. This makes it all the more important to assess what these models can achieve now or in the near future, and what will remain unattainable beyond that. We also acknowledge the ethical and practical challenges associated with these advancements, emphasizing the importance of responsible AI and data privacy. We must be careful to ensure that benefits are shared equitably and that technology respects individual rights. In this paper, we highlight advances in ML-based multimodal research and discuss what the near future holds. Our goal is to provide insights into this research stream for both the multimodal research community, especially in linguistics, and the broader ML community. In this way, we hope to foster collaboration in an area that is likely to shape the future of technologically mediated human communication. (shrink)

In communication theory, the distinctive contribution of pragmatism is often construed in terms of providing a comprehensive orientation to inquiry. In this article, I argue that this appropriation, plausible as it is, has been partly hampered by a neglect of significant tensions between different pragmatist conceptions of inquiry, rooted in the philosophies of Peirce and Dewey. I identify a number of central commonalities and divergences between these viewpoints, focusing on the question of the aims of inquiry. The undeniable points of (...) difference include core issues such as the significance of truth and the social-melioristic motives for inquiry. Yet, the article finds that the gaps between the pragmatists are not as wide and debilitating as they may at first appear; and a closer consideration of the implications of these fissures can actually be beneficial for the development of a more nuanced and robust pragmatist framework for social research. At the centre of this reconstruction is a minimal-meliorist conception of inquiry understood as habit-formation and habitmodification. I conclude the article with a brief review of the alleged critical deficit in pragmatism, and suggest some distinctive ways in which the classical pragmatists can contribute to critical communication inquiry. (shrink)

Current guidelines on investigators' responsibilities to communicate research results to study participants may differ on whether investigators should proactively re-contact participants, the type of results to be offered, the need for clinical relevance before disclosure, and the stage of research at which results should be offered. Lack of consistency on these issues, however, does not undermine investigators' obligation to offer to disclose research results: an obligation rooted firmly in the principle of respect for research participants.

This article proposes to identify the determinants of core ethical values among mass communications researchers in academia and industry. A survey of these 2 groups found that although both groups valued confidentiality equally, academic researchers scored higher on integrity and beneficence, whereas industry researchers experienced higher role conflicts.

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)

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.

Guidelines for health research focus on protecting individual research subjects. It is also vital to protect the communities involved in health research. In particular, a number of studies have been criticized on the grounds that they exploited host communities. The present paper attempts to address these concerns by providing an analysis of community exploitation and, based on this analysis, determining what safeguards are needed to protect communities in health research against exploitation. (edited).

Enhancing Communication & Collaboration in Interdisciplinary Research, edited by Michael O'Rourke, Stephen Crowley, Sanford D. Eigenbrode, and J. D. Wulfhorst, is a volume of previously unpublished, state-of-the-art chapters on interdisciplinary communication and collaboration written by leading figures and promising junior scholars in the world of interdisciplinary research, education, and administration. Designed to inform both teaching and research, this innovative book covers the spectrum of interdisciplinary activity, offering a timely emphasis on collaborative interdisciplinary work. The book’s four main (...) parts focus on theoretical perspectives, case studies, communication tools, and institutional perspectives, while a final chapter ties together the various strands that emerge in the book and defines trend-lines and future research questions for those conducting work on interdisciplinary communication. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research (...) participants and their community from research-related risks, as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

When scientists or science reporters communicate research results to the public, this often involves ethical and epistemic risks. One such risk arises when scientific claims cause cognitive or behavioural changes in the audience that contribute to the self-fulfilment of these claims. I argue that the ethical and epistemic problems that such self-fulfilment effects may pose are much broader and more common than hitherto appreciated. Moreover, these problems are often due to a specific psychological phenomenon that has been neglected in (...) the research on science communication: many people tend to conform to ‘descriptive norms’, that is, norms capturing (perceptions of) what others commonly do, think, or feel. Because of this tendency, science communication may frequently produce significant social harm. I contend that scientists have a responsibility to assess the risk of this potential harm and consider adopting strategies to mitigate it. I introduce one such strategy and argue that its implementation is independently well motivated by the fact that it helps improve scientific accuracy. (shrink)

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked (...) to a large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)

The developments along the Mekong River, including in Cambodia, have boomed. There were 755 dams. Of these, 537 have been completed, and 152 have been planned or proposed. Of these, 52 were under construction, and 14 have been canceled or suspended. Of these dams, 392 were hydropower, 337 were irrigation, and 26 were other types (CGIAR, 2015). Even though some officials saw economic development as a result of the hydropower dam, the negative impacts of hydropower dams were seen by many (...) local experts and NGOs. The negative impacts include reduced fishing stocks and exacerbated socio-economic issues (Asia and the Pacific Policy Society, 2022). Experts have conducted some research on ecosystems and livelihoods, but there has been a lack of studies conducted by local communities to investigate their cross-border impacts as a result of the hydropower dam, despite the fact that local communities have been facing issues as a result of the Mekong Development. The community research protocol was developed to improve local communities' understanding of their local contexts and their confidence in negotiating with decision-makers and policymakers to address and respond to their needs and the findings of studies on local planning for sustainable community development. The paper aims to guide community leaders and staff in conducting community research on transboundary impacts on fisheries resources, ecosystems, and the livelihoods of local communities using their knowledge. (shrink)

Philosophical research tends to be done separately from empirical research, but this makes it difficult to tackle questions which require both. To make it easier to address these hybrid research questions, I argue that we should sometimes combine philosophical and empirical investigations. I start by describing a continuum of research methods from data collecting and analysing to philosophical arguing and conceptualising. Then, I outline one possible middle-ground position where research is equally philosophical and empirical: the (...) Community of Inquiry reconceived as a research method. In this method, a group of participants engage in philosophical discussion and dialogue to answer the research question . I argue that this collaborative philosophical inquiry, moderated by a philosopher, provides a new method for collecting and testing data. The results are philosophical positions and arguments blended with empirical findings. Next, I illustrate how I used this philosophical–empirical method in a recent study to evaluate the strength of educational metaphors. I conclude that the Community of Inquiry is a viable means of combining philosophical and empirical research, and a new and worthwhile method for research in education. (shrink)

The article “Extending Research Protections to Tribal Communities” examines whether it is appropriate to extend the Belmont Report’s ethical principles beyond the individual...

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)

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)

In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship plays an important role, is needed.Our aim is to (...) ethically reflect communication processes by identifying patterns used by physicians to motivate patients’ participation in clinical research and to assess whether patients also use these patterns in formulating their own research motivation. We conducted a secondary analysis with empirical data from a research project involving physicians and patients in a clinical research setting of a biomarker study for rectal cancer treatment. Our empirical data included observations of physician–patient consultations ( n = 54) and semi-structured interviews with patients ( n = 40). Overall, we collected 93 interviews.We found two dominant communication patterns, which physicians applied for motivating patients to take part in this research study. Some forms of these patterns tend to mislead patients’ understanding, while others could justifiably be applied in this consultation setting without undermining patients’ autonomy. This insight that the physician–patient communication has a strong influence on patients increases the importance to strengthen physicians’ ethically acceptable communication patterns regarding research participation.We further suggest that there is a need for a critical reflection of the ethics committee’s requirements for information regarding research participation. (shrink)

It is widely agreed that foreign sponsors of research in low- and middle-income countries (LMICs) are morally required to ensure that their research benefits the broader host community. There is no agreement, however, about how much benefit or what type of benefit research sponsors must provide, nor is there agreement about what group of people is entitled to benefit. To settle these questions, it is necessary to examine why research sponsors have an obligation to benefit the (...) broader host community, not only their subjects. Justifying this claim is not straightforward. There are three justifications for an obligation to benefit host communities that each apply to some research, but not to all. Each requires a different amount of benefit, and each requires benefit to be directed toward a different group. If research involves significant net risk to LMIC subjects, research must provide adequate benefit to people in LMICs to avoid an unjustified appeal to subjects’ altruism. If research places significant burdens on public resources, research must provide fair compensation to the community whose public resources are burdened. If research is for profit, research sponsors must contribute adequately to the upkeep of public goods from which they benefit in order to avoid the wrong of free-riding, even if their use of these public goods is not burdensome. (shrink)

Community engagement is increasingly defended as an ethical requirement for biomedical research. Some forms of community engagement involve asking the consent of community leaders prior to seeking informed consent from community members. Although community consent does not replace individual consent, it could problematically restrict the autonomy of community members by precluding them from research when community leaders withhold their permission. Community consent is therefore at odds with one of the central principles of bioethics: respecting autonomy. This raises the (...) question as to how community consent can be justified or even required. This paper aims to provide an answer to this question by arguing, based on the work of Taylor and Kymlicka, that community practices are important for the identity and autonomy of community members. When these practices are incompatible with a solitary focus on individual informed consent, they need to be protected by making these decision‐making practices (including asking permission to community authorities) part of the consent process. Since these decision‐making practices are important for the autonomy of community members, community consent with the goal of protecting these practices is not necessarily in conflict with autonomy. (shrink)

Dans cet article méthodologique, les auteurs reviennent sur la manière dont ils ont conduit une recherche qualitative multilingue consistant à explorer les barrières rencontrées par les personnes Sourdes en Ireland du Nord lorsqu’elles cherchent à avoir accès au système judiciaire. Dans la mesure du possible, les pratiques de recherche des auteurs ont respecté les principes d’une recherche participative prenant appui sur la communauté (CBPR). Ils explorent les défis d’une recherche réalisée en langue des signes américaine (ASL), britannique (BSL) et irlandaise (...) (ISL), en anglais parlé ou avec l’aide d’interprètes ayant la maîtrise de la langue des signes britannique et irlandaise. Centrant la recherche sur les expériences des Sourds qui apprennent à circuler dans le système judiciaire, les auteurs ont mis en place des méthodes de recherche participatives et prenant appui sur la communauté. Celles-ci ont conduit à une discussion soutenue et une action conjointe avec les auteurs et les membres de la communauté Sourde d’Irlande du Nord visant à lever les barrières auxquelles les personnes Sourdes font face lorsqu’elles interagissent avec le système judiciaire. En présentant l’approche méthodologique adoptée en Ireland du Nord, les auteurs souhaitent présenter de manière transparente leur démarche dans l’espoir que d’autres chercheurs pourront reproduire ce qui a le mieux fonctionné et éviter les obstacles qui ont été rencontrés dans la conduite d’un travail en partenariat avec les membres de la communauté Sourde dans d’autres pays. (shrink)