The enthusiasm for research in an Indigenous context has led to the introduction of formal guidelines for researchers to visit communities. While welcome, this has not been achieved without increased bureaucratization of research relationships. It appears that many Indigenous communities, with their limited resources, are ill-equipped to deal with the administrative imperatives of Indigenous research protocols. Based on the experiences of anthropological field research in the Innu context, this article shows how respectful research relationships could be established outside the bureaucratic (...) and administrative framework generally advocated by research protocols. The heart of this approach lies in the researcher’s radical participation in social life, and more specifically in taking seriously the social premises of the people with whom he works. The mistake would be to think that this collaborative approach is situated in informality: rather, it takes place within an eminently formal framework that corresponds to the criteria and values of the researcher’s Indigenous collaborators. (shrink)

There are now a large number of guidelines to follow if you want to carry out ethical research in an Indigenous context. In practice, even with the best will in the world, it is difficult to disentangle what needs to be adhered to and what is truly ethical. The path informally advocated in the field of Indigenous studies is collaborative research, but is this always possible?

Many ethnographic researchers have raised concerns over the potential impacts that the institutionalization of ethics review boards can have on social science research, especially within healthcare settings. However, few articles to-date have documented how these norms and practices play out in actuality. This paper, therefore, uses autoethnography to provide an account of three ethical challenges that arose during my process of seeking ethics approval through institutional review boards to conduct ethnographic fieldwork in a healthcare setting. In doing so, I demonstrate (...) how bureaucratic accountability took precedence over my research expertise, making the research that I initially set out to do inaccessible, questionable, and ‘unethical’, despite being carried out in accordance with the current standards governing research involving human participants and their data. I conclude with ways to move beyond this existing ethics structure towards a more collaborative approach between ethics boards, researchers, and research participants grounded within the realities of the field. (shrink)

Doctoral students in clinical, counseling, and school psychology programs often collaborate with faculty on research projects in their training as scientist-practitioners. Yet, the determination of publications' credit and order of authorship on resulting manuscripts continues to be a major concern and challenging process for professional psychologists and student collaborators. This article describes the use of case-based learning and semi-structured interview approaches to instruct first-year clinical psychology doctoral students in publication ethics during a research seminar. The instructor models ethical decision-making (...) with 1) a discussion of four cases from his own professional experiences and 2) a description of the Authorship Eligibility Assessment form, which he developed for use with junior researchers. The authors advocate for more educational strategies to supplement the APA standards in teaching the ethics of the publication process. Implications in terms of graduate student development and research collaborations in the field of professional psychology were discussed. (shrink)

Background: Several studies have investigated the experiences of first-generation immigrant nurses in new workplaces. Yet, little is known about how native nurses and newcomers collaborate in their care for aging residents in European nursing homes. Objective: To gain a deeper understanding of interactions between first-generation immigrant nurses and native nurses in their care for aging residents in a Dutch nursing home. Methods: Ethnography, including 105 h of shadowing immigrant and native nurses, 8 semi-structured interviews with 4 immigrant and 4 established (...) nurses, and 2 focus group discussions with 8 immigrant and 6 established nurses in a Dutch nursing home. Data were analyzed by a post-positivist grounded theory coding approach. Ethical consideration: The Medical Ethical Review Committee of the Leiden University Medical Center approved this study. Results: The interactions between established staff and newcomers were influenced by norms, rules and regulations, policies and protocols. In daily practice and institutional structure, we observed both opportunities and challenges. The strict time schedules and the requisite standards of care were opportunities related to nurses’ expectations. Residents’ needs were sometimes challenging and inhibited newcomers’ active participation. However, sometimes new practices were developed where nurses created common ground, tinkered, and formed an inclusive playing field to enact good care. Conclusion/ discussion: This study shows that despite obstacles, there was room to make small changes in the rules of the game of nursing. These moments of tinkering may be sufficient to establish a stable, inclusive workforce for first-generation immigrants and give room to the evolvement of hybrid professional identities. Implications: The findings of this Dutch study are relevant for nursing ethics related to “good care” and nurses in other cultural contexts on how the integration of immigrant nurses in European countries in general could be facilitated. (shrink)

In order to maximize human performance, defence forces continue to explore, develop, and apply human performance enhancement (HPE) methods, ranging from pharmaceuticals to (bio)technological enhancement. This raises ethical, legal, and societal concerns and requires organizing a careful reflection and deliberation process, with relevant stakeholders. We discuss a range of ethical, legal, and societal aspects (ELSA), which people involved in the development and deployment of HPE can use for such reflection and deliberation. A realistic military scenario with proposed HPE application can (...) serve as a starting point for such an iterative and participatory process. Stakeholders can discuss this application, modify its features, and design appropriate processes around it – for instance, procedures for informed consent. We propose that organizing aspects into these three categories – ethical, legal, and societal – can help involve appropriate interlocutors at different moments: legal aspects with people in strategy or management roles, from the start of a project; ethical aspects with people in operations and medical roles, during development; and societal aspects with people in communication and personnel roles, during deployment. Notably, we developed and discussed this framework and the three aspects in close collaboration with personnel from the military. (shrink)

Agricultural-technology (ag-tech) and agroecology both promise a better farming future. Ag-tech seeks to improve the food system through the development of high-tech tools such as sensors, digital platforms, and robotic harvesters, with many ag-tech start-ups promising to deliver increased agricultural productivity while also enhancing food system sustainability. Agroecology incorporates diverse cropping systems, low external resource inputs, indigenous and farmer knowledge, and is increasingly associated with political calls for a more just food system. Recently, demand has grown for the potentially groundbreaking (...) benefits of their convergence, with the University of California, Santa Cruz (UCSC) attempting just such a union. Building on its combined expertise in engineering and agroecology, as well as a longstanding reputation as a socially progressive institution, university administrators believe that UCSC could produce a unique, socially just form of ag-tech designed for small, low-resource farmers—a rare contribution given ag-tech’s tendency to cater primarily to large-scale agribusiness. This paper examines the complexities of uniting agroecology and ag-tech through interviews with agroecologists, engineers, and social scientists involved in UCSC’s ag-tech initiative. Within the setting of a historically radical yet neoliberalizing university, I find that significant epistemic and structural barriers exist for agroecology and ag-tech to come together on an even playing field. This case study contributes to broader discussions of the future of food and farming by focusing on the contours and challenges of a widely called-for agricultural collaboration, highlighting its difficulty but also areas of possibility in a particularly rich, contested context. (shrink)

This article introduces _the Ethics Laboratory_ as an inter-sectorial and cross-disciplinary dialogical forum which can be viewed as an educational tool for moral learning. _The Ethics Laboratory_ represents a platform for the informal, collaborative investigation, in strict confidentiality, of ethical questions that have social consequences and/or legal concerns and bridges boundaries between research communities, institutions and patients. Its methodological structure proposes an experimental, open-ended way of unpacking implied assumptions, underlying values, comparable notions and observations from different professional fields. In connection (...) with a large social science project on precision medicine, we conducted four Ethics Laboratories followed by eight interviews with a selected number of participants. Through these interviews we learnt how this exploratory dialogical forum heighten moral awareness on issues that are shared among stakeholders who work to implement precision medicine in Denmark. Though the framework was developed specifically to foster ethical reflection within precision medicine, its dialogical structure lends itself to other professional areas and can easily be adopted and carried out. (shrink)

What is Religious Ethics? An Introduction is an accessible and informative overview to major themes and methods in religious ethics. This short and lively book demonstrates the relevance and importance of ethics based in religious traditions and describes how scholars of religious ethics think through moral problems. Combining an issues-based approach with a model of studying ethics religion-by-religion, this volume examines pressing topics through a variety of belief systems - Hinduism, Buddhism, Jainism, Judaism, Christianity, Islam, and Sikhism - while also (...) importantly spotlighting indigenous communities. Engaging case studies invite readers to consider the role of religions with regard to issues such as: CRISPR Vegetarianism Nuclear weapons Women's leadership Reparations for slavery What is Religious Ethics? is a reliable and easily digestible introduction to the field. With chronologically structured chapters, discussion questions, suggestions for further reading, and interviews with scholars of religious ethics, this is an ideal guide to those approaching the study of religious ethics for the first time. (shrink)

Our paper explores the complex place-based relations of cross-sector partnerships between Indigenous and non-Indigenous partners. We draw on a longitudinal in-depth case study of the Bundian Way, an Indigenous-led cross-sector partnership of over 40 organisations. Through practices of listening to history and walking ‘on Country’, the non-Indigenous partners and our team came to appreciate the indivisibility of place and time and bear witness to the intergenerational trauma of colonially imposed divisions. By combining a 45-day place-based ethnography with a 36-month participant (...) observation and repeated interviews with the Advisory Committee members, we explain how non-Indigenous members of the cross-sector partnership came to realise, and reverse, these place-time divisions. We contribute to an ethics of custodianship by first contrasting, and then combining, Indigenous and Western ways of knowing place through time. (shrink)

This paper seeks to analyze the construction of ethics in sexuality research in which qualitative methods are employed in the field of social sciences. Analyses are based on a bibliographic review of current discussions on research methods of queer theory and on the authors' own experiences of past research on sexuality. The article offers a theoretical perspective on the ways ethnography and in‐depth interviews become methods that can rely on a consensual method and create a politics of intimacy between the (...) researchers and research participants. The politics of intimacy may contribute to the production of a politically engaged knowledge while escaping from the moral matrix that usually governs the relationship between researchers and research participants. It is argued here that the researcher's sexed and gendered body matters for fieldwork; that the consensual method among participants may be employed in sexuality research as a fruitful tool; and that the relationships created among researchers and participants can pose a challenge to predetermined ethical guidelines in research. As a result, discussions problematize the existence of a politics of intimacy in sexuality research that is characterized by ethical relations among research participants. (shrink)

This study examines the dynamics of how ideas about entrepreneurship are transmitted from Public Organizations (POs) and Non-Public Organizations (NPOs) to Indigenous entrepreneurs, using a case study in Ecuador based on 29 interviews and field observations. Employing the concept of Institutional Translation, a three-stage translation process model was developed, encompassing the conveyance of ideas about entrepreneurship from POs and NPOs, the response by Indigenous entrepreneurs, and the evaluation of translation outcomes. This process occurs within a high institutional distance context, reflecting (...) significant cultural and social disparities between these actors, complicating the translation process. The findings indicate that POs and NPOs do not differentiate Indigenous entrepreneurs from others and fail to consider essential cultural components, such as traditional knowledge, when conveying ideas about entrepreneurship. Conversely, Indigenous entrepreneurs exhibit diverse levels of adoption and rejection of these ideas, highlighting their agency and resilience in protecting and continuing to use their traditional knowledge in their entrepreneurial activities despite external pressures. This research makes three contributions: it advances the field of Indigenous entrepreneurship by theorizing the complex process of transferring ideas about entrepreneurship from external actors to Indigenous entrepreneurs; it enhances business ethics discourse on the critical role of cultural differences by examining the ethical challenges arising from the interaction; and it addresses overlooked aspects within Institutional Translation by exploring a high institutional distance context where cultural disparities complicate the translation process. (shrink)

In Brazil, the epicenter of the Zika crisis, brown, black, and indigenous poor women living in municipalities with scarce resources were disproportionally affected. The gendered consequences of the epidemic exposed how intersectional lenses are central to understand the impact of public health emergencies in the lives of women and girls. The demand for Zika-affected children and women to be research participants is relevant for an ethical analysis of participant protection procedures during a crisis. We investigated how women experienced research participation (...) by analyzing their narratives. Two-year-long longitudinal qualitative study in Brazilian sites located in the epidemic's epicenter was performed using mixed methods: ethnography with women from two distinct states and individual semi-structured interviews with five women in different Zika-affected states, four of which were community leaders. All women in the study were mothers or grandmothers of Zika-affected children. Thematic analysis was used for data evaluation. Women perceived being pressured to participate in research and a lack of benefit sharing. Structural determinants of gender inequality, such as its effect on power distribution, were found to impact research participant protection. Formal procedures for research protocols approvals were insufficient in protecting participants because these instruments were unable to account for structural aspects. Communitarian mobilization, through WhatsApp groups, was found to be an important mechanism to create conditions to challenge oppressive structures. Strengthening public health, effective community-based participation in research planning and implantation of ethical strategies that promotes gender equality can have transformative effect on unequal power structures and promote participant protection. (shrink)

"This volume explores what it means for applied theatre practice to be conducted in an ethical way and examines how this affects the work done with communities and participants. It considers how practitioners can effectively balance aesthetics and ethics in the process of creating performance, particularly with relatively inexperienced and often vulnerable groups of people who are being asked to both tell and stage their stories. While Part One offers an overview of critical debates and the editors' reflections on their (...) own practice, Part Two presents a range of international case studies that explore how the theories and issues are worked out in a variety of diverse practices. The two sections bring together both theoretical and practical ways for theatre-makers to examine the ethics of their applied theatre projects. In Part One, readers are presented with a critical introduction to ethics in applied theatre practice, informed by the thinking of philosophers, scholarly literature on applied theatre, and the editors' own experience, as they consider the question - What is the good? For practitioners working in the field of applied theatre, it provides recommendations for community-based ethical approaches working with principles of voice, agency, collaboration, relationality and reciprocity. Part Two presents a range of international case studies that consider ethics from varying critical perspectives and contexts, including projects in Australia, Nigeria, Sri Lanka, Bangladesh, the United Kingdom, and Canada. Covering work with participants of many ages, from children to seniors, the case studies include indigenous perspectives on a language revitalization project with the Hul'q'umi'num' people of British Columbia; the work of a professional dance theatre company working with addicts and people in recovery; interactive drama used in an educational context in Nigeria, and applied theatre projects in situations of trauma with refugees on the Greek island of Lesbos, among others"--. (shrink)

Background Clients are invited to play a role in decisions about their care. Collaborative deliberation comprises constructive engagement, recognition of alternative actions, comparative learning, construction and elicitation of preferences and preference integration. Collaborative deliberation between clients and professionals is a process that requires an interest in each other, sharing of views on alternatives and preferences and integrating into decisions. The aim is to gain insight into collaborative deliberation in consultations and the clients’ perception of arranging long-term care. Design A descriptive (...) qualitative study to explore collaborative deliberation in consultations between clients and professionals. Six organisations providing long-term care were included. Data collection of nine clients involved observations of consultation with field notes and audio-records, interviews with clients and professionals shortly and 3–6 months after the consultation and questionnaires to collect background information. The data were analysed by deductive content analysis. Findings Constructive engagement was visible in all consultations. Clients and professionals showed respect, empathy and curiosity towards each other. In most consultations, two or more alternative actions are recognised and discussed. Comparative learning appears to be two sided, the client and the professional learn from each other's knowledge and experiences. Construction and elicitation of preference, and preference integration, seems to be present, but difficult to recognise in all consultations. Discussion/conclusion Although all propositions could be identified, there seems room for improvement in preference elicitation and integration of these preferences in the discussions on courses of action. Assistance seems needed with preference elicitation, both for the clients and for the professional. (shrink)

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

In Canada, since the early 2000s, action and collaborative research have become increasingly popular in the social sciences. In this form of research, knowledge is produced not only by specialized researchers but also with actors in the field; it is often presented as a panacea for ethical research with local populations, especially when they are in a situation of marginalization. This research is in practice seen as a potential means of empowerment. Based on my experience as an anthropologist working in (...) Quebec Aboriginal communities, I examine how, when applied to non-prescriptive disciplines such as mine, these types of research can present different images. Are they really more ethical than fundamental research? I highlight the questions raised by these models, which can change the way I practice my profession, paying particular attention to the commitment of the researcher, the validity and strength of methodologies and epistemologies, and the degrees of participation of informants, all within the framework of the ethical rules formulated by the Canadian granting councils and by Aboriginal people themselves. (shrink)

As the implementation of new approaches and procedures of medical ethics is as complex and resource-consuming as in other fields, strategies and activities must be carefully planned to use the available means and funds responsibly. Which facilitators and barriers influence the implementation of a medical ethics decision-making model in daily routine? Up to now, there has been little examination of these factors in this field. A medical ethics decision-making model called METAP was introduced on three intensive care units and two (...) geriatric wards. An evaluation study was performed from 7 months after deployment of the project until two and a half years. Quantitative and qualitative methods including a questionnaire, semi-structured face-to-face and group-interviews were used. Sixty-three participants from different professional groups took part in 33 face-to-face and 9 group interviews, and 122 questionnaires could be analysed. The facilitating factors most frequently mentioned were: acceptance and presence of the model, support given by the medical and nursing management, an existing or developing ethics culture, perception of a need for a medical ethics decision-making model, and engaged staff members. Lack of presence and acceptance, insufficient time resources and staff, poor inter-professional collaboration, absence of ethical competence, and not recognizing ethical problems were identified as inhibiting the implementation of the METAP model. However, the results of the questionnaire as well as of explicit inquiry showed that the respondents stated to have had enough time and staff available to use METAP if necessary. Facilitators and barriers of the implementation of a medical ethics decision-making model are quite similar to that of medical guidelines. The planning for implementing an ethics model or guideline can, therefore, benefit from the extensive literature and experience concerning the implementation of medical guidelines. Lack of time and staff can be overcome when people are convinced that the benefits justify the effort. (shrink)

Background: Multi-collaborator research is increasingly becoming the norm in the field of biomedicine. With this trend comes the imperative to award recognition to all those who contribute to a study; however, there is a gap in the current “gold standard” in authorship guidelines with regards to the efforts of those who provide high quality biosamples and data, yet do not play a role in the intellectual development of the final publication. -/- Methods and findings: We carried out interviews with 36 (...) individuals working in, or with links to, biobanks in Switzerland, in order to understand how they interpret, apply and value authorship criteria in studies involving biosamples. The majority of respondents feel that authorship is an important motivating factor in working and publishing collaboratively. However, our findings suggest that in some cases, authorship guidelines are being ignored in favor of departmental standards which recognize “scientific work” as meriting authorship. -/- Conclusions: Our results support the current calls in the literature for an alternative method of crediting biomaterial contributions, in order to ensure appropriate authorship inclusion and promote collaborative research involving biobanks. (shrink)

This paper examines the identity of Asian swamp buffalo (Bubalus bubalis) from different value orientations. Buffalo were introduced into Northern (Top End) Australia in the early nineteenth century. A team of transdisciplinary researchers, including an ethicist, has been engaged in field research on feral buffalo in Arnhem Land over the past three years. Using historical documents, literature review, field observations, interviews with key informants, and interaction with the Indigenous land owners, an understanding of the diverse views on the scientific, cultural, (...) and economic significance of buffalo was obtained. While the diverse stakeholders in buffalo exploitation and management have historically delivered divergent value orientations on the nature of the human–buffalo relationship, we argue that over time there is the possibility of values and ethical convergence. Such convergence is possible via transdisciplinary and transcultural agreement on the value stances that constitute the construction of the being or identity of buffalo in the face of the overwhelming need to manage population density and gross numbers. (shrink)

The non-governmental organizations (NGOs) that assume the bulk of emergency care during large-scale disasters in the developing world must expend considerable time and resources to ensure donations to sustain their field operations. This long-standing dilemma for the humanitarian community can create a competitive environment that: • Compromises the delivery and quality of services,• Allows the effectiveness of operations to be compromised by a lack of cooperation and collaboration,• Disrupts the timely and accurate coordination and analysis of outcome measures that• Undermines (...) the long-term capacity of indigenous aid organizations. (shrink)

Purpose – The purpose of this paper is to examine institutional influences on the customer service and complaints handling practices of the Australian Internet industry. Design/methodology/approach – The study adopted a qualitative research methodology using semi-structured interview as a research method. The study was informed by constructivist/interpretive research paradigm approaches to knowledge. Eleven senior executives from key Internet industry stakeholder organizations were interviewed. Findings – Using the neo-institutional theory lens, this study found that the institutional forces played a pivotal (...) role in bringing all Internet industry stakeholders together to address CS/CH shortcomings in the old Telecommunications Consumer Protection Code 2007. This led to significant changes to the CS/CH practices detailed in the revised TCP Code 2012. The study findings revealed that frequent and fateful collaborations between central institutional actors have led to the emergence of organizational fields. The actors identified in the emerging organizational fields actively influence the CS/CH practices and the subsequent implementation of the practices in vLISPs. Research limitations/implications – The study focused on the functional aspects of service quality. Technical aspects of SQ is equally important, and future research needs to consider both aspects of SQ when assessing overall performance of vLISPs. Practical implications – The study findings encourage vLISP managers to continue collaboration with external stakeholders and develop customer-friendly practices that deliver desirable CS/CH outcomes. Social implications – The study findings revealed that when all vLISP industry stakeholders collaborate with each other on a focal issue, there is noticeable progress towards development of CS practices that will contribute to a better CS experience. Originality/value – An evidence-based approach was used towards understanding and explaining how and why institutional actors of technology-based service organizations act together. A significant contribution arising from this study is the identification and discussion of emerging organizational fields comprising the central actors in the Internet industry. These emerging organizational fields have the potential to develop into mature organizational fields and inform future CS/CH practices and consumer protection policies in the Australian Internet industry. (shrink)

In Third Digital Documentary: A Theory and Practice of Transmedia Arts Activism, Critical Design and Ethics Anita Chang offers a theory and methodology of transmedia arts activism within the technocultural and sociopolitical landscape of expanded documentary production, distribution, reception and participation. Through a detailed analysis of her transmedia project on indigenous and minority language endangerment and revival that consists of the feature-length documentary Tongues of Heaven, and the companion web application Root Tongue: Sharing Stories of Language Identity and Revival, she (...) reveals the layers and depths that comprise a critical arts practice when confronted with complex sociopolitical issues while working with multiple communities across territorial/national boundaries. In the context of the growing field of transmedia documentaries, Chang discusses the potentials and benefits of a critical design practice and production ethics that can transform this field to pilot new collaborations in documentary and digital media platforms towards a third digital documentary. (shrink)

Mosquito-borne diseases take a tremendous toll on human populations, especially in developing nations. In the last decade, scientists have developed mosquitoes that have been genetically modified to prevent transmission of mosquito-borne diseases, and field trials have been conducted. Some mosquitoes have been rendered infertile, some have been equipped with a vaccine they transmit to humans, and some have been designed to resist diseases. This article focuses on ethical issues raised by field trials of disease-resistant, genetically modified mosquitoes. Some of these (...) issues include: protecting the public and the environment from harm, balancing benefits and risks, collaborating with the local community, avoiding exploitation, and safeguarding the rights and welfare of research subjects. One of the most difficult problems involves protecting the welfare of community members who will be impacted by the release of mosquitoes but who are not enrolled in the study as research subjects. To address this concern, field trials should take place only when the targeted disease is a significant public health problem in an isolated area, the benefits of the trial for the community are likely to outweigh the risks, community leaders approve of the trial, and there are measures in place to protect the welfare of un-enrolled community members, such as informing the community about the study and offering free treatment to people who contract mosquito-borne diseases. Since the justification of any field trial depends on a careful examination of the scientific and ethical issues, proposed studies should be evaluated on a case-by-case basis. (shrink)

This paper examines the identity of Asian swamp buffalo (Bubalus bubalis) from different value orientations. Buffalo were introduced into Northern (Top End) Australia in the early nineteenth century. A team of transdisciplinary researchers, including an ethicist, has been engaged in field research on feral buffalo in Arnhem Land over the past three years. Using historical documents, literature review, field observations, interviews with key informants, and interaction with the Indigenous land owners, an understanding of the diverse views on the scientific, cultural, (...) and economic significance of buffalo was obtained. While the diverse stakeholders in buffalo exploitation and management have historically delivered divergent value orientations on the nature of the human–buffalo relationship, we argue that over time there is the possibility of values and ethical convergence. Such convergence is possible via transdisciplinary and transcultural agreement on the value stances that constitute the construction of the being or identity of buffalo in the face of the overwhelming need to manage population density and gross numbers. (shrink)

ABSTRACT Scholarship in the area of social movements points to the importance of inter-group collaboration and alliance building. In the case of Indigenous-led movements and the issue of solidarity with non-Indigenous movement participants, scholarship at the intersection of Native studies and social movements suggests that such alliances can be built and sustained but that unlearning colonial attitudes and behaviors is central to this process. Through in-depth interviews with non-Native solidarity participants, this article considers how engagement with Indigenous thought and action (...) re-shapes particpants’ conceptions of environment and place. Findings suggest that such involvement calls attention to histories of violence as well as ongoing practices of dispossession causing activists to grapple not only with their personal and family histories but also with their evolving relationship with environmentalism. (shrink)

BackgroundThe ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa over the past 3 decades. However, HIV cure research is relatively new to the region and significant ethical and social challenges are anticipated. There has been no published empirical enquiry in Africa into key informant perspectives on HIV cure research. Consequently, this study was conducted to gain preliminary data from South African HIV clinicians, researchers and activists.MethodsIn-depth interviews were conducted on a purposive sample (...) of fourteen key informants in South Africa. Audiotaped interviews were transcribed verbatim with concurrent thematic analysis. The perspectives of HIV clinicians, researchers and activists were captured. Analyst triangulation occurred as the data were analysed by three authors independently.ResultsThe rapid evolution of HIV cure research agendas was prominent with participants expressing some concern that the global North was driving the cure agenda. Participants described a symbiotic relationship between cure, treatment and prevention research necessitating collaboration. Assessing and managing knowledge and expectations around HIV cure research emerged as a central theme related to challenges to constructing ‘cure’ - how patients understand the idea of cure is important in explaining the complexity of cure research especially in the South African context where understanding of science is often challenging. Managing expectations and avoiding curative misconception will have implications for consent processes. Unique strategies in cure research could include treatment interruption, which has the potential to create therapeutic and ethical conflict and will be perceived as a significant risk. Ethical challenges in cure research will impact on informed consent and community engagement.ConclusionsIt was encouraging to note the desire for synergy amongst researchers and clinicians working in the fields of prevention, treatment and cure. Translation of complex HIV cure science into lay language is critical. Moving forward, RECs must be adequately constituted with scientific expertise and community representation when reviewing cure protocols. It is hoped that knowledge and resource sharing in the context of collaboration between research scientists working in cure and those working in treatment and prevention will accelerate progress towards cure. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by car (...) from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)

This article argues that considering cross-sector collaborations through the lens of indigenous-corporate engagements yields a more comprehensive understanding of the range of cross-sector engagement types, emphasizes the importance of cross-cultural bridge building which has received little attention in the literature :849–873, 2005), and highlights the potential for innovation via collaborations with fringe stakeholders. The study offers a more overarching typology of cross-sector collaborations and, building on an ethical approach to sustainable development with indigenous peoples, proposes a theoretical framework for cross-cultural (...) bridge building between businesses and fringe stakeholders. By incorporating this framework into the literature on value creation in cross-sector collaborations, we suggest a model for value creation in cross-sector collaborations with fringe stakeholders. Finally, using case studies to illustrate the article’s theoretical arguments, we demonstrate the model’s usefulness for the analysis and development of indigenous-corporate collaborations. (shrink)

Collaborative research practices in the field of plant genetic resources must follow the principles of fairness and equity as defined in the Convention on Biological Diversity (CBD) and in the International Treaty on Plant Genetic Resources for Food and Agriculture (ITPGRFA). In this context the concepts of fairness and equity generally refer to the substantive and procedural dimensions associated with sharing the benefits of this research. But neither term is clearly defined by these international treaties, and the meanings attributed to (...) the concepts vary among different societies. This paper looks at the question of how to account for the diversity among value systems when conducting research that implicates diverse stakeholders and respects the requirements of fairness and equity. We incorporated an auto-ethnography method developed as part of a multi-stakeholder network involved in research projects on plant genetic resources in West Africa. A theatrical device was used as a framework for testing the principles of fairness and equity, helping us to collectively identify feelings of injustice, and explore the conditions for making collaborative research practices more ethical in ways that respect the perspectives of different stakeholders. In an environment of extensive political and socio-cognitive inequality, this approach makes it possible to explain the criteria relating to interactional justice and expectations in terms of socio-political and socio-emotional benefits. It also invites us to consider the principles of fairness and equity in a framework of ethical competence that goes beyond international directives. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Ethnography as Christian Theology and Ethics ed. by Christian Scharen and Anna Marie VigenJohn KiessEthnography as Christian Theology and Ethics Edited by Christian Scharen and Anna Marie Vigen New York: Continuum, 2011. 304 pp. $29.95Over the past decade, an increasing number of Christian theologians and ethicists have turned to ethnographic methodologies in order to attend more closely to the complexities of lived faith and the bodily character of (...) theological knowledge. For those wishing to get a glimpse of what this looks like in practice, what its implications might be for theology and ethics, and how one might set off and do it oneself, this book is an excellent introduction.Editors Christian Scharen and Aana Marie Vigen organize the book into three parts. The first part orients readers to the use of ethnography in cultural anthropology and reviews the recent “ethnographic turn” in Christian theology and ethics. This is followed by a brief survey of theological critiques of social science and a defense of ethnography against these critiques. Scharen and Vigen argue that the use of ethnography, far from compromising the integrity of theology, has the potential to renew and enrich the discipline through the incorporation of long-overlooked forms of local wisdom. As a method attuned to practical, often noncognitive forms of knowledge, ethnography can help scholars move away from an exclusive focus on texts to a deeper consideration of the theological and ethical claims “embedded and embodied” in the lives and practices of everyday communities (xxii). [End Page 190]Naturally, the best argument for such an approach is exemplification. The second part of the book presents an impressive collection of ethnographic work from contexts as diverse as Chicago, Atlanta, Oregon, Chiapas, Nairobi, and Gulu. Contributors employ ethnography to compare pastoral leadership in two African American churches, track grassroots dissent on the issue of contraception among women living with HIV/AIDS, and reimagine the debate on physician-assisted suicide from the perspective of the poor and disabled. Particularly effective are Vicini’s exploration of the liturgical response of local churches to the legacy of violence in Chiapas and Whitmore’s critical examination of his own place as a white researcher in Northern Uganda, which makes hauntingly transparent the ethical complexities of the research process itself.The final part of the book offers a more practical how-to guide for those looking to do ethnography, covering such issues as institutional review board approval, interview methodology, and accountability to research subjects. This part, like the rest of the book, will be a gift for graduate students facing down a dissertation proposal or scholars contemplating the use of ethnography in their work. Admirably reflexive, vigilantly attentive to issues of power and privilege, and articulate about the ways that research can be a form of discipleship, one can only hope this book will succeed in its aim of encouraging other scholars to “go and do likewise.”Those who have already incorporated ethnographic techniques in their scholarship or who are looking for a fuller articulation of the relation between ethnography, ethics, and theology may find themselves less satisfied with the book. Its treatment of existing options (virtue ethics, Catholic social ethics) and thinkers (David Ford, Stanley Hauerwas, and John Milbank) is thin, and a number of key figures in the broader story of the ethnographic turn in theology (Karl Barth, Dietrich Bonhoeffer, and Hans Frei) are conspicuously missing. Their absence is felt particularly strongly in the unanswered questions the volume provokes, including how to account for God’s difference when appeals to experience become primary (Barth), and how to avoid positivism when appeals to the “reality” of the church become the point of departure for ecclesiology (Bonhoeffer).Such provocations, however, are reminders that we are still at the very early stages of the ethnographic turn in Christian theology and ethics. If this volume is any indication, the future of this exciting intersection of thought and practice looks very promising indeed. [End Page 191]John KiessLoyola University MarylandCopyright © 2013 Society of Christian Ethics... (shrink)

This essay is a critical engagement with recent assessments of comparative religious ethics by John Kelsay and Jung Lee. Contra Kelsay's proposal to return to a neo-Weberian sociology of religious norm elaboration and justification, the authors argue that comparative religious ethics is and should be practiced as a field of study in active conversation with other fields that consider human flourishing, employing a variety of methods that have their roots in multiple disciplines. Cross-pollination from a variety of disciplines is a (...) strength of comparative ethics, which has enlivened recent and ongoing research on ethics, not a problem to be resolved by convergence on a single, distinctively comparative project. The authors also argue in response to Lee and Kelsay that while individual comparative studies of virtue and personal formation can be flawed in various ways, this line of research has been productive and at times very compelling. Moreover, attention to comparative virtue ethics shows how scholarship on some ethical topics necessitates drawing on a variety of perspectives and disciplinary backgrounds, a conclusion relevant to all work in religious ethics today. (shrink)

Background: Collaboration between physicians and nurses is key to improving patient care. We know very little about collaboration and interdisciplinary practice in African healthcare settings. Research question/aim: The purpose of this study was to explore the ethical challenges of interdisciplinary collaboration in clinical practice and education in Botswana Participants and research context: This qualitative descriptive study was conducted with 39 participants (20 physicians and 19 nurses) who participated in semi-structured interviews at public hospitals purposely selected to represent the three levels (...) of hospitals in Botswana (referral, district, and primary). Ethical considerations: Following Institutional Review Board Approval at the University of Pennsylvania and the Ministry of Health in Botswana, participants’ written informed consent was obtained. Findings: Respondents’ ages ranged from 23 to 60 years, and their duration of work experience ranged from 0.5 to 32 years. Major qualitative themes that emerged from the data centered on the nature of the work environment, values regarding nurse–doctor collaboration, the nature of such collaboration, resources available for supporting collaboration and the smooth flow of work, and participants’ views about how their work experiences could be improved. Discussion: Participants expressed concerns that their work environment compromised their ability to provide high-quality and safe care to their patients. The physician staffing structure was described as consisting of a few specialists at the top, a vacuum in the middle that should be occupied by senior doctors, and junior doctors at the bottom—and not a sufficient number of nursing staff. Conclusion: Collaboration between physicians and nurses is critical to optimizing patients’ health outcomes. This is true not only in the United States but also in developing countries, such as Botswana, where health care professionals reported that their ethical challenges arose from resource shortages, differing professional attitudes, and a stressful work environment. (shrink)

The field of “business for peace” recognizes the role that businesses can play in peacebuilding. However, like much of the discussion concerning business in conflict zones, it has prioritized the view of multinationals, often overlooking the role of indigenous local firms. The economic, social, and intergroup dynamics experienced by local businesses in conflict zones are understudied, with the current paper beginning by positioning micro- and small enterprises in the peacebuilding debate, then engaging with multidisciplinary works to understand how they foster (...) peace. Through a case study set in north Lebanon, we conducted semi-structured interviews with twenty-three MSE owners in one industry who operate across sectarian divisions and with recently displaced Syrian refugees. Our findings indicate that local business activity can simultaneously promote peace and foster conflict, with peacebuilding improved when intergroup differences are reduced within the operating environment. Furthermore, the importance of economic development was elevated for local businesses, suggesting that peace through mechanisms such as social development, the rule of law, and training, is only achieved if economic needs are alleviated through these measures. We conclude by citing how contextual factors in conflict zones can enhance intergroup differences, and how resolving such factors can promote peacebuilding, with further empirical work needed in this area. (shrink)

The history of Russian social anthropology has long been best known for the work of three, late nineteenth‐century “exile ethnographers,” each sent to the Russian Far East for their anti‐tsarist activities as students. All three men—Vladimir Bogoraz, Vladimir Iokhel'son, and Lev Shternberg—produced voluminous and celebrated works on Russian far eastern indigenous life, but it was the young Shternberg who had perhaps the most profound effect on setting the agenda for the canonic evolutionist line soon to take hold in late Russian (...) imperial and early Soviet ethnography. This essay draws on archival, library, and field research to revisit the life and work of Shternberg in order to tell the story of “group marriage” that he documented for the life of one Sakhalin Island indigenous people, Gilyaks (or Nivkhgu, Nivkhi). Documented in this way by Shternberg, the Nivkh kinship system proved a crucial “missing link” for Friedrich Engels, who had long been eager to provide evidence of primitive communism as man's natural state. For Gilyaks, the die was cast. Their role as the quintessential savages of Engels’ favor made them famous in Russian and Soviet ethnographic literature, and significantly enhanced their importance to Soviet government planners. This essay tracks that episode and its aftermaths as a pivotal moment in the history of Russian social anthropology and of evolutionist thought more broadly. (shrink)

Providing theoretical grounding, case studies and practical solutions, Implementing Ethics in Educational Ethnography examines how researchers can overcome ethical dilemmas associated with and encountered during ethnographic research. From the initial stages of research design such as consideration from regulatory bodies, through research occurring in the field to project completion and reporting, it explores many of the factors associated with ensuring culturally sensitive and ethical studies. The book covers key questions including: What can researchers expect of ethical review boards? Where and (...) with whom should dialogue take place about ethicality within research? What effect does a research focus have on regulation and research practice? What is the effect of context on ethical practices? Does the positionality of a researcher have an effect on ethical practices? How do we ensure that ethicality supports the trustworthiness of research projects? Using a range of international case studies, Implementing Ethics in Educational Ethnographyprovides researchers and students with invaluable details about how to navigate the field, ensuring that they can sustain good ethical practice throughout the life of a research project. have an effect on ethical practices? How do we ensure that ethicality supports the trustworthiness of research projects? Using a range of international case studies, Implementing Ethics in Educational Ethnographyprovides researchers and students with invaluable details about how to navigate the field, ensuring that they can sustain good ethical practice throughout the life of a research project. (shrink)

The need for ethical leadership in navigating today’s complex, global and competitive organisations has been established. While research has confirmed the importance of ethical leaders in promoting positive organisational and employee outcomes, scant research has examined the antecedents of ethical leadership. Furthermore, there has been a call for further examination of leadership models, particularly indigenous leadership models. Responding to these issues, this study suggests Māori leaders’ values add insights into enhancing ethical leadership. Three studies confirm the role of Māori values (...) and ethical leadership. Study one, based on kaupapa Māori research methods, is an exploratory 22-interview study of Māori leaders and identifies five values, as common to successful indigenous leaders. In study two, 249 employees rate their leaders on these five dimensions in relation to their ethical leadership and exchange relationships. Structural equation modelling shows strong support for the distinct nature of the five values and their positive influence on ethical leadership perceptions and quality exchange relationships. Study three, on 122 employees, reinforces the findings of study two—and demonstrates that LMX predicts job outcomes both indirectly and directly, with humility and collectivism also directly predicting outcomes. Our findings suggest that indigenous leaders’ values enhance perceptions and outcomes of ethical leadership for employees. (shrink)

Experience has shown that the application of ethical guidelines developed for research in developed countries to research in developing countries can be, and often is, impractical and raises a number of contentious issues. Various attempts have been made to provide guidelines more appropriate to the developing world context; however, to date these efforts have been dominated by the fields of bioscience, medical research and nutrition. There is very little advice available for those seeking to undertake collaborative social science or natural (...) science research in developing countries and what is there tends to be held within disparate sources. Charting the development of a set of ethics documentation for future use by the Ecosystem Services for Poverty Alleviation (ESPA) programme research community, this paper outlines past and present attitudes towards ethics procedures amongst this community and suggests ways in which ethics procedures might be made more relevant and user-friendly to researchers working in this area. (shrink)

This paper examines the outcomes of Preserving the Past Together, a workshop series designed to build the capacity of local heritage managers to engage in collaborative and community-based approaches to archaeology and historic preservation. Over the past two decades practitioners of these approaches have demonstrated the interpretive, methodological, and ethical value of integrating Indigenous perspectives and methods into the process and practice of heritage management and archaeology. Despite these benefits, few professional resources exist to support the development of collaborative relationships (...) between local heritage managers and Tribal nations. Filling this need, Preserving the Past Together’s interactive workshops and keynote lectures involved participants in a discussion of the central themes in collaborative and Indigenous approaches to archaeology today, highlighting the local challenges and opportunities that exist for archaeologists, heritage managers, and Tribal nations to work together to care for the past. This paper presents an overview of the event series’ goals, the strategies it used to foster collaboration among the diverse stakeholders of the Salish Sea, and the next steps the project’s co-directors are taking to further support communication and collaboration between stewards and stakeholders in the Pacific Northwest. (shrink)

Most healthcare providers work from ethical principles based on a Western model of practice that may not adhere to the cultural values intrinsic to Indigenous peoples. Breaking bad news is an important topic of ethical concern in health research. While much has been documented on BBN globally, the ethical implications of receiving bad news, from an Indigenous patient perspective in particular, is an area that requires further inquiry. This article discusses the experiences of Māori lung cancer patients and their families, (...) in order to investigate the ethical implications of receiving bad news. Data collection occurred through 23 semistructured interviews and nine focus groups with Māori lung cancer patients and their families in four districts in the Midland Region of New Zealand: Waikato, Bay of Plenty, Lakes and Tairāwhiti. The findings of this study were categorised into two key themes: communication and context. Avenues for best practice include understanding the centrality of the HCP–patient relationship and family ties in the healthcare journey, and providing patients with the full range of viable treatment options including hope, clear advice and guidance when the situation calls for it. Overall, the findings of this study hold implications for providing culturally safe and humanistic cancer care when BBN to Māori and Indigenous patients. (shrink)

Since its inception contemporary medical ethics has been regarded by many of its practitioners as ‘applied ethics’, that is, the application of philosophical theories to the moral problems that arise in health care. This ‘applied ethics’ model of medical ethics is, however, beset with internal and external difficulties. The internal difficulties point out that the model is intrinsically flawed. The external difficulties arise because the model does not fit work in the field. Indeed, the strengths of that work are its (...) highly nuanced, particularized analyses of cases and issues and its appreciation of the circumstances and contexts that generate and structure these cases and issues. A shift away from a theory-driven ‘applied ethics’ to a more situational, contextual approach to medical ethics opens the way for ethnographic studies of moral problems in health care as well as a conception of moral theory that is more responsive to the empirical dimensions of those problems. (shrink)

Background Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures – utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists’ and ELSI scholars’ perspectives on collaborations with each other and the factors that may affect these collaborations.Methods 20 semi-structured interviews with (...) US-based genome scientists and ELSI scholars were conducted between June–September 2021. Interviews were analyzed using inductive thematic analysis.Results Genome scientists and ELSI scholars provided different understandings of the value and goals of their collaborations with each other. Genome scientists largely perceived ELSI expertise to be relevant for human subjects research; they described ELSI scholars as communicators who help the public and/or study participants better understand genomics research. In comparison, ELSI scholars viewed themselves as developing and implementing policies; they expressed frustration at how scientists can misunderstand their research methods or negatively perceive them. A combination of factors – both structural (e.g., criteria for promotion) and cultural (e.g., perceptions of what colleagues value and respect) – seemed to shape these diverging perspectives.Conclusion Academic institutions, funders, and researchers commonly call for collaborations between genome scientists and ELSI scholars, but under-consider how their different conceptual frameworks, research methods, goals, norms, and values, conjoin to affect such partnerships. Acknowledging, exploring, and addressing the complex interplay between these factors could help to more effectively facilitate collaborations between genome scientists and ELSI scholars. (shrink)

To determine whether ethical issues concerned with field research are addressed in the peer-review process, instructions to authors and reviewers of 141 (mainly natural science) journals were examined to ascertain how often ethical issues were mentioned. Only one-third (n=41) of responding journals addressed ethical issues in their instructions to authors or reviewers. When ethical issues were considered, most of the journals limited their concerns to ethical issues associated with animal and general human experimentation. No journal mentioned ethical practices in working (...) with indigenous peoples or on traditional lands. Only two journals addressed the ethics of research in sensitive areas in their instructions to authors, only one in its instructions to reviewers. We suggest that peer-reviewed journals respond to an emerging issue in ecological research by formally incorporating research ethics into their instructions to authors and reviewers. Furthermore, these instructions should address the ethical issues associated with field research and in working with indigenous peoples and on traditional lands. (shrink)

This work investigates the complexity of ethics as a field of inquiry and practice across a principal's career. Fully contextualized, and thus carrying the contradictions and requirements of any school, the issues realistically do not usually lead to a single, beat-all answer, as any solution will likely have positive and negative consequences. Drawn from the authors' experiences and studies of schools over decades, the central figure is a fictional principal of a magnet school, whose dilemmas reflect the questions educators must (...) be prepared for. Each decision takes into account the principal's and staff's identities and values because they are all human and their opinions influence the outcomes. The work injects analytic, virtue, feminist, care, deontological, and critical theory insights as Deweyan ethics provides a lens for examining dilemmas. This accessible work blends reflective theory, the ordinary worlds of schools, and engaging pedagogical practice to guide those planning to enter the education sector. (shrink)

Background: A growing body of evidence about nurses’ ethical conflicts has been added to nursing science in recent decades, but no research has been done in Estonia. Ethical conflicts are a cultural and context sensitive phenomenon, so the historical, legal, social, economic and political backgrounds and position of nursing have had an impact on ethical conflict experiences. Aim: Describe nurses’ experiences of ethical conflicts. Method: A qualitative, descriptive study was conducted among nurses (n = 21) in May-October 2018 in Estonia. (...) The data were collected in the form of semi-structured individual interviews and analysed using the inductive content analysis method. Ethical considerations: Due to the sensitive nature of the research topic, only individual interviews were carried out. Findings: Nurses’ ethical conflicts were related to situations that violated the rights, safety or well-being of the patient or relatives, caused them suffering, were against their will or threatened nurses’ dignity and professionalism through a variety of practices, attitudes and relationships. The insufficiency of patient care and professional collaboration emerged as important sources of nurses’ ethical conflicts and were connected to historical and societal factors. Conclusions: In order to achieve good quality of care, nurses need to have appropriate education and organisational support to carry out ethical daily care. More research is needed to understand the multidimensional cultural and contextual knowledge of ethics and nurses’ ethical conflicts. (shrink)

OBJECTIVES: To study empirically whether ethical theory (from the mainstream principles-based, virtue-based, and feminist schools) usefully describes the approaches doctors and nurses take in everyday patient care. DESIGN: Ethnographic methods: participant observation and interviews, the transcripts of which were analysed to identify themes in ethical approaches. SETTING: A British old-age psychiatry ward. PARTICIPANTS: The more than 20 doctors and nurses on the ward. RESULTS: Doctors and nurses on the ward differed in their conceptions of the principles of beneficence and respect (...) for patient autonomy. Nurses shared with doctors a commitment to liberal and utilitarian conceptions of these principles, but also placed much greater weight on relationships and character virtues when expressing the same principles. Nurses also emphasised patient autonomy, while doctors were more likely to advocate beneficence, when the two principles conflicted. CONCLUSION: The study indicates that ethical theory can, contrary to the charges of certain critics, be relevant to everyday health care-if it (a) attends to social context and (b) is flexible enough to draw on various schools of theory. (shrink)

Background Psychedelic medicine is a rapidly growing area of research and policy change. Australia recently became the first country to legalize the prescription of psychedelics and serves as a case study of issues that may emerge in other jurisdictions. Despite their influence as a stakeholder group, there has been little empirical exploration of psychedelic researchers’ views on the development of psychedelic research and the ethical concerns. Methods We thematically analysed fourteen interviews with Australian psychedelic researchers. Results Three themes were constructed (...) from the data: 1) coming out of the shadow of the 1960s, 2) challenges and affordances in engaging stakeholders, and 3) growing pains in innovation and translation. Conclusion The results illustrated tensions arising from the rapid growth of psychedelic research from a small group of dedicated individuals with a similar worldview, to a multi-interest, regulated industry. Participants’ experiences and viewpoints were influenced by the history of psychedelic research, and this was met with an overarching concern for protecting the field from premature discontinuation, as well as maximizing potential positive impacts. Targets for stakeholder collaboration and initiatives to support responsible innovation in psychedelics include equitable access, sustainable industry involvement, productive research agendas, responsible reporting of evidence, and risk-taking within the relative safety of clinical trials. (shrink)

AbstractWhile the literature on oncofertility decision-making was central to the bioethics debate on social egg freezing when the practice emerged in the late 2000s, there has been little discussion juxtaposing the two forms of egg freezing since. This article offers a new perspective on this debate by comparing empirical qualitative data of two previously conducted studies on medical and social egg freezing. We re-analysed the interview data of the two studies and did a thematic analysis combined with interdisciplinary collaborative (...) auditing for empirical ethics projects. Despite their different contexts, major similarities in women’s decision-making and reasoning were found. We developed two main common themes. Firstly, women felt a clear need to plan for future options. Secondly, they manipulated decision-times by postponing definitive decisions and making micro-decisions. The comparison highlights that the passage of time and the preservation of future choice seems to permeate all aspects of the patient experiences in both studies. As a result of considering real-world lived experiences, we suggest that there are many overlaps in women’s reasoning about egg freezing regardless of why they are making a decision to freeze. These overlaps are morally relevant and thus need to be further integrated into the existing arguments that have been canvassed in the flourishing egg freezing and fertility preservation debates across the field, and in policy and practice globally. (shrink)

BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were collecting, using, or sharing (...) health data in different contexts in Sweden, were interviewed. We used systematic expert interviews to access these scientists’ specialist knowledge, and analysed the interviews with thematic analysis. Phrases, sentences, or paragraphs through which ethical values and norms were expressed, were identified and coded. Codes that reflected similar concepts were grouped, subcategories were formulated, and categories were connected to traditional ethical approaches.ResultsThrough several examples, the respondents expressed four different ethical approaches, which formed the main conceptual categories: consideration of consequences, respect for rights, procedural compliance, and being professional.ConclusionsTo a large extent, the scientists’ ethical approaches were consistent with ethical and legal principles. Data sharing was considered important and worth pursuing, even though it is difficult. An awareness of the complex issues involved in data sharing was reflected from different perspectives, and the respondents commonly perceived a general lack of practical procedures that would by default ensure ethical and legally compliant data collection and sharing. We suggest that it is an opportune time to move on from policy discussions to practical technological ethics-by-design solutions that integrate these principles into practice. (shrink)

The challenge for those responsible for funding, brokering and assessing the merit of proposed Indigenous research is to identify and then work co-operatively with appropriate representatives of Indigenous interests in order to increase the flow of benefits from research to Indigenous peoples. Experience in Australia has shown that this is not a straightforward process. In this paper we indicate some reasons why it is important for the research community to broker research with representative Indigenous organisations and to involve Indigenous peoples (...) in the ethical assessment and conduct of research. We then identify some barriers to the achievement of these objectives and outline recently developed interventions from the field of health research that aim to promote a more effective working relationship between Indigenous peoples and members of the research community. (shrink)