Citizens today are increasingly expected to be knowledgeable about and prepared to engage with biomedical knowledge. In this article, I wish to reframe this ‘public understanding of science’ project, and place fresh emphasis on public understandings of research: an engagement with the everyday laboratory practices of biomedicine and its associated ethics, rather than with specific scientific facts. This is not based on an assumption that non-scientists are ‘ignorant’ and are thus unable to ‘appropriately’ use or debate science; rather, (...) it is underpinned by an empirically-grounded observation that some individuals may be unfamiliar with certain specificities of particular modes of research and ethical frameworks, and, as a consequence, have their autonomy compromised when invited to participate in biomedical investigations. Drawing on the perspectives of participants in my own sociological research on the social and ethical dimensions of neuroscience, I argue that public understanding of biomedical research and its ethics should be developed both at the community level and within the research moment itself in order to enhance autonomy and promote more socially robust science. Public bioethics will have to play a key role in such an endeavour, and indeed will contribute in important ways to the opening up of new spaces of symmetrical engagement between bioethicists, scientists and wider publics—and hence to the democratisation of the bioethical enterprise. (shrink)

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

The primary purpose of Institutional Review Boards (IRBs) is to protect the rights and welfare of human research participants. Evaluation and measurement of how IRBs satisfy this purpose and other important goals are open questions that demand empirical research. Research on IRBs, and the Human Research Protection Programs (HRPPs) of which they are often a part, is necessary to inform evidence-based practices, policies, and approaches to quality improvement in human research protections. However, to date, HRPP (...) and IRB engagement in empirical research about their own activities and performance has been limited. To promote engagement of HRPPs and IRBs in self-reflective research on HRPP and IRB quality and effectiveness, barriers to their participation need to be addressed. These include: extensive workloads, limited information technology systems, and few universally accepted or consistently measured metrics for HRPP/irb quality and effectiveness. Additionally, institutional leaders may have concerns about confidentiality. Professional norms around the value of participating in this type of research are lacking. Lastly, obtaining external funding for research on IRBs and HRPPs is challenging. As a group of HRPP professionals and researchers actively involved in a research consortium focused on IRB quality and effectiveness, we identify potential levers for supporting and encouraging HRPP and IRB engagement in research on quality and effectiveness. We maintain that this research should be informed by the core principles of patient- and community-engaged research, in which members and key stakeholders of the community to be studied are included as key informants and members of the research team. This ensures that relevant questions are asked and that data are interpreted to produce meaningful recommendations. As such, we offer several ways to increase the participation of HRPP professionals in research as participants, as data sharers, and as investigators. (shrink)

Over the past few decades, there has been increasing attention focused on the ethics of health research, particularly in low- and middle-income countries. Despite the increasing focus on the literature addressing human protection, community engagement, appropriate consent procedures and ways to mitigate concerns around exploitation, there has been little discussion about how the duration of the research engagement may affect the ethical design and implementation of studies. In other words, what are the unique ethical challenges when (...) researchers engage with host communities for longer periods (10 years or more), and what special considerations does this time commitment generate when applying ethical principles to these kinds of studies? This article begins to outline key areas of ethical concern that arise during long-term, sustained research activities with communities in low-resource settings. Through a review of the literature and consultations with experts in health systems, we identified the following key themes: fair benefits and long-term beneficence; community autonomy, consultation and consent; impacts on local health systems; economic impacts of research participation; ethical review processes; and institutional processes and oversight within research organizations. We hope that this preliminary exploration will stimulate further dialogue and help inform ethical guidance around long-term research engagements in the developing world. (shrink)

Reshaping our methodological research tools for adequately capturing injustice and domination has been a central aspiration of feminist philosophy and social epistemology in recent years. There has been an increasingly empirical turn in recent feminist and political theorization, engaging with case studies and the challenges arising from conducting research in solidarity with unequal partners. I argue that these challenges cannot be resolved by merely adopting a norm and stance of deference to those in the struggle for justice. To (...) conduct philosophical research in an engaged and solidaristic manner, I suggest that deference be supplemented by three methodological and normative principles: 1) epistemic humility, 2) accountability, and 3) co-producing knowledge. I situate these principles within contemporary philosophical work on solidarity, and show how they might help confront power imbalances and other methodological hazards that arise when conducting research in solidarity with others. I arrive at these principles in part by critically reflecting on my own attempt to conduct research in solidarity with women’s rights activists in Senegal. (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)

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 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)

Over the past decade work engagement has gained both business and academia attention. With growing number of studies and meta-analyses the concept of work engagement is one of the pillars of positive work and organizational psychology. This systematic review presents the current state of research on work engagement in Poland. Results confirmed that work-engagement studies have not yet reached the threshold to conduct meta-analysis. The review of measurement methods and synthesis of findings allows to identify (...) strengths and gaps in Polish studies. Discussion of limitations and biases in current research is accompanied with urge to overcome them and develop thriving stream of research on work engagement. (shrink)

Motivated by exploitation concerns, we argue for the importance of participant engagement in basic human intracranial electrophysiology research. This research takes advantage of unique neurosurgical opportunities to better understand complex systems of the human brain, but it also exposes participants to additional risks without immediate therapeutic intent. We argue that understanding participant values and incorporating their perspectives into the research process may help determine whether and to what extent research practices and the resulting distributions of (...) risks and benefits constitute exploitation and contribute to building a brain research paradigm that is genuinely responsive to participant values. More broadly, we highlight the importance of paying attention to participant interests in non-therapeutic brain research. (shrink)

Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build (...) ‘true research teams’ where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (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.

Undertaking engagement in public health research is ethically essential. There is a growing emphasis on practicing engagement as the co‐construction of knowledge, which goes beyond other common forms of engagement in health research practice: consulting and informing. Taking such an approach means researchers jointly construct knowledge with research users and beneficiaries; all parties design and conduct research together and share decision‐making power. This article makes the normative argument that such engagement is necessary (...) to achieve the foundational moral aims of public health research—building relations of equality and addressing the health needs of those considered disadvantaged—which reflect the field's underlying commitment to social justice. It next identifies and discusses three ways in which co‐constructing knowledge advances those moral aims: by facilitating self‐determination, supporting individuals’ right to research, and maximizing social knowledge to address cognitive and epistemic injustice. Objections to the arguments presented in the article are then articulated and defended against. (shrink)

Using an evidence-based model developed by Egbert and colleagues, editors Joy Egbert and Priya Panday-Shukla provide a comprehensive overview of task engagement for teachers and researchers. Research has positioned task engagement as central to student learning, and Egbert Panday-Shukla now collate this research into a resource teachers can utilize.The chapters address how task engagement theory, evidence, and instruction can be applied to increase learner achievement. The editors and contributors draw from backgrounds across STEAM education and (...) other disciplines to present task engagement and connect its importance to the success of today's students. Chapters include background information, resources, exercises, and ideas for teachers and researchers to extend the research behind individual elements of the task engagement model into practice. Each chapter focuses on one component of the model, and includes guiding questions and key points, a "how-to" section, and recommended tasks for K-12 classroom use. Though ideal for teacher education research scholars, students, and faculty, this book is useful for instructors at all levels interested in integrating task engagement principles into their practice. (shrink)

Using data on submitted and published manuscripts in Feminist Economics from 1995 to 2019, we examine differences in method and scope used by authors residing in the Global North and Global South. We specifically focus on research methods, intersectional analyses, region of analysis, and co-authorship status. Further, using logistic regression models, we examine the relationship between authors’ location and use of research methods. We find authors in the Global South are more likely to engage in empirical and mixed-methods (...) papers compared to Global North authors in our sample. Moreover, a greater share of Global South authors engage in intersectional analysis and exhibit geographical focus on developing countries. Drawing insights from the Feminist Economics manuscripts data, we argue that encouraging Global South research can contribute to the goals of the field of feminist economics – aimed at inclusivity, diversity of standpoints, and plurality in research methods, thereby improving overall economic research. (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)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how (...) are patients being engaged—and how should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

Understanding how teacher leaders are engaged in curriculum affairs is critical with the implementation of instructional decentralization. The current study adopts a qualitative approach to investigate Teaching Research Group leaders’ involvement in curriculum leadership in the Chinese context. It explores the conceptions of TRG leaders by interviewing 20 of them, observing four meetings held by TRG leaders, and collecting 10 extracts from appraisal summaries of TRG leaders in secondary schools in China. Drawing on the findings, this paper examines the (...) characteristics of TRG leader’s engagement in CL. More importantly, data highlighted significant problems the participants perceived and faced in their work as TRG leaders, which consisted of amplifying the necessity for empowering TRG leaders and identifying the phenomenon that said leaders are less empowered and less motivated to undertake the CL role. The results add to the international body of knowledge on the teachers’ engagement in CL. (shrink)

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

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)

Our article is based on a study of our integration of social foundations coursework with filmmaking and participatory action research, bringing teacher candidates and middle and high school students together. The project was carried out in partnership between an urban university and two nearby public schools within a Midwestern city known for high child poverty rates and weak academic outcomes. The project sought to stretch the imagination of teacher candidates in areas related to school reform and to provide opportunities (...) for the youth in terms of inquiry and activism concerning their schools and neighborhoods. The article discusses the direction of the project over the semester and the challenges encountered in carrying out this work. Study findings suggest that the students valued the use of film and learning of research skills, as well as the coming together each week. Technology glitches precluded a final film product, compromising the extent to which project goals concerning activism in the area of educational and public policy were achieved. The study serves as careful reminder of the challenges in carrying out PAR and the need to frequently revisit questions about project intentions and direction. (shrink)

In the context of the endangered situation and revitalization of Sámi in a Northern Norwegian local community, this study discusses various aspects of responsibility that are construed and involved in the encounter of a local informant and the researcher in a research interview. The informant uses storytelling as an artful and elaborate means to position himself, to assess his own and other community members’ responsibility for their endangered heritage language, and to involve the researcher in his account. The analysis (...) shows how storytelling operationalizes different social role relations, and how the informant uses the meaning potential of the interview situation as a resource to communicate his view on who are accountable and who should acknowledge their respective responsibilities for Sámi language use and revitalization. (shrink)

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

Simple Heuristics That Make Us Smart invites readers to embark on a new journey into a land of rationality that differs from the familiar territory of cognitive science and economics. Traditional views of rationality tend to see decision makers as possessing superhuman powers of reason, limitless knowledge, and all of eternity in which to ponder choices. To understand decisions in the real world, we need a different, more psychologically plausible notion of rationality, and this book provides it. It is about (...) fast and frugal heuristics--simple rules for making decisions when time is pressing and deep thought an unaffordable luxury. These heuristics can enable both living organisms and artificial systems to make smart choices, classifications, and predictions by employing bounded rationality. But when and how can such fast and frugal heuristics work? Can judgments based simply on one good reason be as accurate as those based on many reasons? Could less knowledge even lead to systematically better predictions than more knowledge? Simple Heuristics explores these questions, developing computational models of heuristics and testing them through experiments and analyses. It shows how fast and frugal heuristics can produce adaptive decisions in situations as varied as choosing a mate, dividing resources among offspring, predicting high school drop out rates, and playing the stock market. As an interdisciplinary work that is both useful and engaging, this book will appeal to a wide audience. It is ideal for researchers in cognitive psychology, evolutionary psychology, and cognitive science, as well as in economics and artificial intelligence. It will also inspire anyone interested in simply making good decisions. (shrink)

Some of the most pressing and emergent societal challenges are often exposed by researchers in the field of educational research. Education Research and Schooling in Rural Europe by Cath Gristy, Li...

Business and society researchers, as well as practitioners, have been critiqued for ignoring those with less voice and power often referred to as “fringe stakeholders.” Existing methods used in B&S research often fail to address issues of meaningful participation, voice and power, especially in developing countries. In this article, we stress the utility of visual participatory research methods in B&S research to fill this gap. Through a case study on engaging Ghanaian cocoa farmers on gender inequality issues, (...) we explore how VPR methods may be used by researchers to achieve more inclusive, and thus more credible, stakeholder research that can improve decision making within businesses. Furthermore, we argue that ingrained social and environmental problems tackled by B&S research and the unique context in which they occur may open up new opportunities to develop participatory visual methods for social change. (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)

Ethnographic fieldwork is subject to a number of tensions regarding the position of the researcher. Traditionally, these are discussed from a methodological perspective, and draw attention to issues such as ‘objectivity’ of the research and the supposed need for ‘distance’ in the process of knowledge-building. Approaching the issue from a different angle, this article provides a reflection on the positionality of the researcher through an autoethnographical account based on fieldwork with socially excluded groups. Rather than reflecting on the (dis)advantages (...) of proximity for the research process, it explores from a personal stance how this role interacts with other roles in the researcher's life (e.g. being a volunteer, a citizen, an advocate, a moral being). Increased awareness about this intrinsic positionality of the researcher calls for a situated conceptualisation of professionalism and science. The author furthermore explores how an autoethnographical approach relates to educational research and su.. (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)

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what (...) purpose, who participates, and how they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs. (shrink)

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)

The knowledge base of how student engagement affects educational outcomes and career attainment has grown immeasurably in the last decade. This title presents methods to connect and re-engage marginalised, uninterested students.

Research on opioid use in pregnancy is critically important to understand how the opioid epidemic has affected a generation of children, but also raises significant ethical and legal challenges. Embedded ethicists can help to fill the gaps in ethics oversight for such research, but further guidance is needed to help strike the balance between integration and independence.

This book consists of conversations with five founding scholars - Karen Barad, Astrid Schrader, Magdalena Gorska, Ericka Johnson and Elizabeth De Freitas - regarding their research practices inspired by agential realism. They are conversations focusing on how they think and analyze empirical material through agential realism in combination with other thinkers (e.g. Deleuze, Derrida, Butler, Haraway, Châtelet and Suchman). The conversations offer entry points to agential realism and the conduct of research practices and open up spaces for learning (...) about research processes, agential realism and agential realist concepts for students and scholars of qualitative research. (shrink)

In “Flourish,” Martin Seligman maintained that the elements of well-being consist of “PERMA: positive emotion, engagement, relationships, meaning, and accomplishment.” Although the question of what constitutes human flourishing or psychological well-being has remained a topic of continued debate among scholars, it has recently been argued in the literature that a paradigmatic or prototypical case of human psychological well-being would largely manifest most or all of the aforementioned PERMA factors. Further, in “A Neuroscientific Perspective on Music Therapy,” Stefan Koelsch also (...) suggested that “Music therapy can have effects that improve the psychological and physiological health of individuals,” so it seems plausible that engaging in practices of music can positively contribute to one living a more optimally flourishing life with greater psychological well-being. However, recent studies on music practice and participation have not yet been reviewed and integrated under the PERMA framework from positive psychology to further explore and explicate this possibility. This article therefore contributes to extant work by reviewing recent research on psychological well-being and music to offer support for the claim that music practice and participation can positively contribute to one living a flourishing life by positively influencing their emotions, engagement, relationships, meaning, and accomplishment. (shrink)

In attempting to provide protection to individuals and communities, childhood immunization has benefits that far outweigh disease risks. However, some parents decide not to immunize their children with some or all vaccines for reasons including lack of trust in governments, health professionals, and vaccine manufacturers. This article employs a theoretical analysis of trust and distrust to explore how twenty-seven parents with a history of vaccine rejection in two Australian cities view the expert systems central to vaccination policy and practice. Our (...) data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination. Our participants perceived that pharmaceutical companies had a pernicious influence over the systems driving vaccination: research, health professionals, and government. Accordingly, they saw vaccine recommendations in conflict with the interests of their child and “the system” underscored by malign intent, even if individual representatives of this system were not equally tainted. This perspective was common to parents who declined all vaccines and those who accepted some. We regard the differences between these parents—and indeed the differences between vaccine decliners and those whose Western medical epistemology informs reflexive trust—as arising from the internalization of countering views, which facilitates nuance. (shrink)

Scholarly interest in employees’ voluntary pro-environmental behavior has begun to emerge. While this research is beginning to shed light on the predictors of workplace pro-environmental behavior, our understanding of the psychological mechanisms linking the various antecedents to employees’ environmentally responsible behavior and the circumstances under which any such effects are enhanced and/or attenuated is incomplete. The current study seeks to fill this gap by examining: the effects of perceived corporate social responsibility on employees’ voluntary pro-environment behavior; an underlying mechanism (...) that links CSR perceptions to these behaviors; and a boundary condition to these relationships. Data from 183 supervisor-subordinate dyads employed in large- and medium-sized casinos and hotels in Guangdong China and Macau revealed that employees’ corporate social responsibility perceptions indirectly affect their engagement in voluntary pro-environmental behavior through organizational identification, and these effects are stronger for employees high in empathy. (shrink)

Ambitiously identifying fresh issues in the study of complex systems, Peter J. Taylor, in a model of interdisciplinary exploration, makes these concerns accessible to scholars in the fields of ecology, environmental science, and science studies. Unruly Complexity explores concepts used to deal with complexity in three realms: ecology and socio-environmental change; the collective constitution of knowledge; and the interpretations of science as they influence subsequent research. For each realm Taylor shows that unruly complexity-situations that lack definite boundaries, where what (...) goes on "outside" continually restructures what is "inside," and where diverse processes come together to produce change-should not be suppressed by partitioning complexity into well-bounded systems that can be studied or managed from an outside vantage point. Using case studies from Australia, North America, and Africa, he encourages readers to be troubled by conventional boundaries-especially between science and the interpretation of science-and to reflect more self-consciously on the conceptual and practical choices researchers make. (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.

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

BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist (...) version of the toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. (shrink)

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of (...) their place in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future. (shrink)

In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and (...) regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned. (shrink)