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)

This article argues that community-based research (CBR)—research that includes the participation of “lay” citizens in the research process—is changing the process of research and knowledge production. The article is an initial attempt to examine the outcomes of CBR and the impact such research is having on knowledge development and funding trends in North America. The article concludes with a set of policy recommendations and areas for further research.

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

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

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

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

Ethical Dilemmas in Community-Based Research: Working with Vulnerable Youth in Rural Communities Content Type Journal Article DOI 10.1007/s10805-010-9123-y Authors Natalie Clark, Thompson Rivers University, Kamloops, BC Canada V2C 5N3 Sarah Hunt, Simon Fraser University, Burnaby, Canada Georgia Jules, Thompson Rivers University, Kamloops, BC Canada V2C 5N3 Trevor Good, University of Victoria, Victoria, Canada Journal Journal of Academic Ethics Online ISSN 1572-8544 Print ISSN 1570-1727 Journal Volume Volume 8 Journal Issue Volume 8, Number 4.

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

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

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

The field of community psychology has focused on individuals' and groups' behavior in interaction with their social contexts, with an emphasis on prevention, early intervention, wellness promotion, and competency development. Over the past few decades, however, community-based applications of the newest research methodologies have not kept pace with the development of theory and methodology with regard to multilevel data collection and analysis. The Handbook of Methodological Approaches to Community-Based Research is intended to aid (...) the community-oriented researcher in learning about and applying cutting-edge quantitative, qualitative, and mixed methods approaches. The Handbook presents a number of innovative methodologies relevant to community-based research, illustrating their applicability to specific social problems and projects. These methodological approaches explore individuals and groups in interaction with their communities and provide examples of how to implement and evaluate interventions conducted at the community level. The chapters discuss how particular methodologies can be used to help gather and analyze data dealing with community-based issues. Furthermore, they illustrate the benefits that occur when community theorists, interventionists, and methodologists work together to better understand complicated person-environment systems and the change processes within communities. (shrink)

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

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

In lieu of an abstract, here is a brief excerpt of the content:More Is Required of Us: Complicating an Ontology of Experience at the Heart of Community-Based ResearchJerry Rosiekit is both unsurprising and reassuring that the Society for the Advancement of American Philosophy would host an invited lecture on community-university research collaborations. One of the most distinctive features of the tradition of philosophy on this continent has been the insistence that lived experience is the ultimate source (...) of knowledge, and, more importantly, amelioration of individual and collective community experience is the ultimate criterion for validation of knowledge relations. Dr. Ira Harkavy and the Netter Center at which he works represent a version of that ideal made institutionally manifest.In his 2022 Coss Lecture, Harkavy offers a vision for how the ideal of knowledge generation grounded in community experience and serving community priorities could be institutionalized in major US research universities. Furthermore, he makes the case that this transformation of research universities would revitalize our collective commitment to democratic citizenship and governance. It is an appealing vision, earnestly offered. In what follows, I celebrate the merits of this vision but raise concerns that it does not adequately consider questions about the ontology of experience. I review some of those questions and offer suggestions about what an updated ontology of experience, one that could revitalize democracy in the manner Harkavy says is needed, would look like.Experiential Basis for My ResponseA short personal introduction will provide context for (and perhaps lend credibility to) my response comments. I am a Professor of Education at the University of Oregon with affiliate appointments in the Department of Philosophy and in the Department of Ethnic Studies. My empirical research [End Page 81] focuses on how we prepare anti-racist educators to work in public schools (Pratt and Rosiek; Rosiek, “School Segregation”; Mitchell and Rosiek; Sconiers and Rosiek). My area of theoretical specialization is the development of new qualitative methodologies for research on educational equity. The latter involves working out the implications of different epistemologies and ontologies for educational inquiry and practice. Specifically, I have spent most of my career looking at the way teachers’ classroom experiences can be a valid source of general knowledge about educational practice and policy (Rosiek and Atkinson; Rosiek and Gleason).Both branches of my scholarship exist in a dialectic with my community activism around educational equity issues. My largest project to date was a ten-year study of the racial resegregation of a public school district, looking at how students and teachers navigated its aftermath (Rosiek and Kinslow). My most recent project involved two years of working with teachers all over the world to identify the ways they addressed equity challenges during the pandemic and to identify the institutional conditions that helped or hindered such work (DeRosia et al.). In a less academic context, I have worked with local educational activist organizations in my home community to support the needs of immigrant families and students, to create safer spaces for LGBTQIA students, and to get more equity-minded school board members elected.I share all of this just to clarify that I am familiar with the challenge of putting university expertise in the service of community improvement and, more specifically, promoting equity in educational institutions. I am familiar with approaching research in a manner that respects practitioners and non-academic community members as sources of knowledge, not just objects of knowledge.Praise for the Work at the Netter CenterFrom the vantage point that experience provides me, I want to offer energetic praise for the work that Harkavy and the Netter Center have been doing these last three decades. We should all recognize the difficulty of integrating the university’s knowledge-producing role with local education and service work (Brewer; Harkavy et al.). It is even more difficult to do so when aspiring to the ideal of collaborative knowledge production with the community in a manner that genuinely commits to epistemic egalitarianism. Service learning can be trivialized and can become the exploitative enlistment of unpaid labor in the service of an agenda exogenous to both the participants and the community (Santiago-Ortiz; Stoecker). [End Page 82]Sharing the power of designing the focus and means of service projects... (shrink)

(2001). Whose History? Whose Future? Expanding the Exploration of Lived Experience in Ethics Consultation to Include Empirical Patient and Family and Community-Based Research. The American Journal of Bioethics: Vol. 1, No. 4, pp. 1-3.

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

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

이 글의 목적은 인간, 자연, 기술 개념의 새로운 이해를 근거로 제안된 지역생태공동체 의 윤리적, 실천적 방안을 제시하는 것에 있다. 우리의 가장 현실적이고 위급한 문제인 기 후위기는 생태계 전체의 위기를 초래했다. 본고는 이 위기의 근원을 근대의 계몽주의에서 파생된 ‘배타적 윤리’에서 찾는다. 근대문명사회는 인간 삶의 편의와 지속을 위해 자연 을 적극 이용하였고, 근대는 개인의 자유권을 토대로 이를 정당화하였다. 그 결과 인간- 이성-주체 중심의 세계관이 형성되면서 비인간-감성-객체들의 세계는 배제되기에 이르 렀다. 계몽주의가 추구하고자 했던 합리적이고 윤리적 세계는 사실상 새로운 종류의 야만 이며, 그 안에 (...) 전체주의라는 모순을 가지면서 공동체는 지속가능성의 힘을 잃게 되었다. 메를로-퐁티의 현상학적 방법론은 이러한 근대적 모순을 비판하면서 공생과 연대를 통한 생태공동체의 가능성을 보여주었고, ‘관계적 윤리’를 근거로 하여 그 지속성을 가능하 게 하였다. 본고에서 제안하는 ‘관계적 윤리’는 몸들간의 공생과 좋은 삶을 가능하게 하는 실천적 방안으로 제시된다. (shrink)

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

Disease control has increasingly shifted towards large scale, disease specific, public health interventions. The emerging problems of HIV, hepatitis, malaria, typhoid, tuberculosis, childhood pneumonia, and meningitis have made community based trials of interventions a cost effective long term investment for the health of a population. The authors conducted this study to explore the complexities involved in obtaining informed consent to participation in rural north India, and how people there make decisions related to participation in clinical research.

MOHAMMED SA, WALTERS KL, LAMARR J, EVANS‐CAMPBELL T and FRYBERG S. Nursing Inquiry 2012; 19: 116–127 [Epub ahead of print]Finding middle ground: negotiating university and tribal community interests in community‐based participatory researchCommunity‐based participatory research (CBPR) has been hailed as an alternative approach to one‐sided research endeavors that have traditionally been conducted on communities as opposed to with them. Although CBPR engenders numerous relationship strengths, through its emphasis on co‐sharing, mutual benefit, and community capacity (...) building, it is often challenging as well. In this article, we describe some of the challenges of implementing CBPR in a research project designed to prevent cardiovascular disease among an indigenous community in the Pacific Northwest of the United States and how we addressed them. Specifically, we highlight the process of collaboratively constructing a Research Protocol/Data Sharing Agreement and qualitative interview guide that addressed the concerns of both university and tribal community constituents. Establishing these two items was a process of negotiation that required: (i) balancing of individual, occupational, research, and community interests; (ii) definition of terminology (e.g., ownership of data); and (iii) extensive consideration of how to best protect research participants. Finding middle ground in CBPR requires research partners to examine and articulate their own assumptions and expectations, and nurture a relationship based on compromise to effectively meet the needs of each group. (shrink)

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

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)

As emphasised in Islamic sources, justice is one of the most important issues covered in the religion of Islam. In fact, justice is a central theme in Islam and has a special value in this regard. Conversation about justice and its nature, as well as its realisation in human communities, has been thus far a necessity in human life. Actually, the establishment and implementation of justice in all areas are crucial for the utopia. Given the importance of this subject, the (...) present study aims to determine and explain the components of the justice-oriented Islamic community based on the teachings of Nahj al-Balaghah. Therefore, the components that introduce justice orientation in the Islamic community are extracted from the sermons, letters and wise sayings (viz. narrations) of Nahj al-Balaghah. Afterward, the extracted components are classified based on the similarity of the themes and concepts. In the end, five classifications are introduced, including distributive justice, procedural justice, interactional justice, social justice and fairness.Contribution: Based on the determined indices, the model of justice-oriented Islamic community is developed. It is thus recommended to pay more attention to the realisation of a justice-oriented Islamic community by researchers and leaders. This is mainly because of the fact that the opposite of a justice-oriented community is one with injustice, where oppression and disrespect for the rights of others occur, divine blessings change, divine wrath and anger are provoked and destruction approaches. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed (...) by our experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

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

This paper considers current personalized recommendation approaches based on computational social systems and then discusses their advantages and application environments. The most widely used recommendation algorithm, personalized advice based on collaborative filtering, is selected as the primary research focus. Some improvements in its application performance are analyzed. First, for the calculation of user similarity, the introduction of computational social system attributes can help to determine users’ neighbors more accurately. Second, computational social system strategies can be adopted to (...) penalize popular items. Third, the network community, identity, and trust can be combined as there is a close relationship. Therefore, this paper proposes a new method that uses a computational social system, including a trust model based on community relationships, to improve the user similarity calculation accuracy to enhance personalized recommendation. Finally, the improved algorithm in this paper is tested on the online reading website dataset. The experimental results show that the enhanced collaborative filtering algorithm performs better than the traditional algorithm. (shrink)

BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, (...) and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

In order for higher education to provide students with up-to-date knowledge and relevant skillsets for their continued learning, it needs to keep pace with innovative pedagogy and cognitive sciences to ensure inclusive and equitable quality education for all. An adequate implementation of flipped learning, which can offer undergraduates education that is appropriate in a knowledge-based society, requires moving from traditional educational models to innovative pedagogy integrated with a playful learning environment (PLE) supported by information and communications technologies (ICTs). In (...) this paper, based on the design-based research, a task-driven instructional approach in the flipped classroom (TDIAFC) was designed and implemented for two groups of participants in an undergraduate hands-on making course in a PLE. One group consisting of 81 students as the experimental group (EG) received flipped learning instruction, and another group of 79 students as the control group (CG) received lecture-centered instruction. The EG students experienced a three-round study, with results from the first round informing the customized design of the second round and the second round informing the third round. The experimental results demonstrated that students in the EG got higher scores of summative tests and final scores than those in the CG. In particular, students’ learning performance in three domains (i.e., cognitive, affective, and psychomotor) differ significantly between the two groups. (shrink)

With the rapid development of the Internet and the normalization of COVID-19 epidemic prevention and control, Online health communities have gradually become one of the important ways for people to obtain health information, and users have to go through a series of information processing when facing the massive amount of data. Understanding the factors influencing user information processing is necessary to promote users’ health literacy, health knowledge popularization and health behavior shaping. Based on the Heuristic-Systematic Model, Information Ecology Theory, (...) Privacy Trade-Off and Self-Efficacy Theory, we constructed a model of factors influencing user information processing in online health communities. We found that information quality and emotional support had indirect effects on heuristic and systematic information processing, and these effects were mediated by privacy concerns and self-efficacy. In our research model, systematic information processing was most positively influenced directly by self-efficacy. Privacy concerns had a direct negative correlation with both dual information processing pathways. Therefore, OHCs managers should develop relevant regulations to ensure the information quality in OHCs and improve privacy protection services to promote user information processing by improving users’ self-efficacy and reducing their privacy concerns. Providing a user-friendly and interactive environment for users is also recommended to create more emotional support, thus facilitating more systematic information processing. (shrink)

As genetic research increasingly focuses on communities, there have been calls for extending research protections to them. We critically examine guidelines developed to protect aboriginal communities and consider their applicability to other communities. These guidelines are based on a model of researcher-community partnership and span the phases of a research project, from protocol development to publication. The complete list of 23 protections may apply to those few non-aboriginal communities, such as the Amish, that are highly (...) cohesive. Although some protections may be applicable to less-cohesive communities, such as Ashkenazi Jews, analysis suggests substantial problems in extending these guidelines in toto beyond the aboriginal communities for which they were developed. (shrink)

Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as (...) a quasi application form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants. (shrink)

Ontologies, as the term is used in informatics, are structured vocabularies comprised of human- and computer-interpretable terms and relations that represent entities and relationships. Within informatics fields, ontologies play an important role in knowledge and data standardization, representation, integra- tion, sharing and analysis. They have also become a foundation of artificial intelligence (AI) research. In what follows, we outline the Coronavirus Infectious Disease Ontology (CIDO), which covers multiple areas in the domain of coronavirus diseases, including etiology, transmission, epidemiology, pathogenesis, (...) diagnosis, prevention, and treatment. We emphasize CIDO development relevant to COVID-19. (shrink)

Social networking sites such as MySpace and virtual communities such as on-line support groups can be a rich source of data for researchers. These sites can be an effective way of reaching and researching young people in order to address their particular health needs. Internet-based research is also potentially risky and exploitative. There is some guidance for conducting research online, but there are no detailed or universally accepted ethics guidelines for research of webspaces such as MySpace (...) or virtual communities in which young people participate. One question that arises is — If MySpace is a public webspace, can research be done without consent? In this paper I investigate ethical issues surrounding young people’s consent in cyber research. I identify issues that help determine whether consent is needed, offer suggestions for dealing with consent in cyberspace and add my voice to the call for a resource of case studies — indispensible in the development of guidelines and the education of researchers and research ethics committees. (shrink)

The article provides an overview of arts-based research within social work and general healthcare practice in Canada, and how it can be used to uncover racism within vulnerable populations, particularly youth, women, immigrants and refugees, the lesbian, gay, bisexual, transgender, queer, and intersex community, and Indigenous peoples. This is a general review of the literature. A literature search was conducted using the University of Western Ontario’s Summons database, with coverage from January 2000 to February 2019. Data exploring (...) participant experiences, personal identity, voice, and invisible powers were extracted, and analyzed using a critical race lens to examine the intersection of societal and cultural practice with race and power.Results indicate that ABR can support therapeutic recovery from oppression by enhancing self-expression of feelings and thoughts, and affording participants the agency to reclaim and reframe their personal narrative. ABR can further generate a sense of community by creating connections between participants with similar oppressions to overcome disconnection and marginalization. Within a broader community context, ABR permits the sharing of stories and insights with others, which can generate dialogue on important social issues to expose areas of social inequity and oppression alongside potential solutions for transformative social action. This dialogue can also extend to discussions with policy makers on the impact of social inequities to guide recommendations that address system gaps for broader community-level change. The paper concludes that ABR can move beyond merely reflecting on social conditions toward actively addressing them by promoting sustainable social change. The voices expressed through ABR illustrate possible solutions to overcome racism through inclusive social practice, deconstruction of the racial status quo, and movement toward an equitable distribution of power. (shrink)