Collaborer avec les peuples autochtones relève d’un équilibre fragile qui peut basculer du « faire avec » à « faire pour ». Cette réflexion en témoigne alors qu’elle est l’occasion de décortiquer l’ingérence d’allochtones dans l’approbation d’une recherche avec une communauté autochtone. À partir de cette situation vécue lors d’un terrain de thèse anthropologique, des questions associées à la décolonisation de la recherche sont abordées.

Objectives To characterize recruitment approaches to research on the brain and mind that involves Indigenous peoples. Methods We conducted a secondary analysis of a Harding et al. (2021) scoping review. Reviewers screened studies (_n_ = 66) for sampling methods, recruitment and engagement, positionality statements, and details on ethics approvals. Synthesis We identified twenty-nine (29) English-language articles relevant to the analysis. Of these, 52% (_n_ = 15/29) reported a mix of sampling methods; 45% (_n_ = 13/29) contained statements or (...) information about author positionalities. While, overall, 24% (_n_ = 7/29) of the studies were missing information about ethics protocols, we observe an improvement over time in the reporting of approvals and use of community-engaged participant recruitment methods. Current brain research studies demonstrate ways of collaborating with Indigenous communities that meet existing ethics guidelines. To be wholly responsive to the needs of Indigenous peoples, however, researchers may need to exceed existing ethical benchmarks.. Positionality statements successfully detailed the relationships of the research teams with the communities with which they work, and contextualized recruitment methods. Conclusion Improved quality and meaningfulness of brain research with Indigenous peoples and trust in the research process and public health will be enhanced when remaining gaps in protecting and reporting of participant recruitment methods are closed. (shrink)

Research involving and impacting Indigenous Peoples is often of little or no benefit to the communities involved and, in many cases, causes harm. Ensuring that Indigenous research is not only ethical but also of benefit to the communities involved is a long-standing problem that requires fundamental changes in higher education. To address this necessity for change, the authors of this paper, with the help of graduate and Indigenous community research assistants, undertook community consultation across (...) their university to identify the local and national ethical needs of Indigenous researchers, communities, and Elders. This paper provides an overview of the consultation process, the themes that emerged from the consultations, and a model of the Wholistic Indigenous Research Framework that emerged. (shrink)

Research ethics regulation in parts of the Global North has sometimes been initiated in the face of biomedical scandal. More recently, developing and recently developed countries have had additional reasons to regulate, doing so to attract international clinical trials and American research funding, publish in international journals, or to respond to broader social changes. In Taiwan, biomedical research ethics policy based on ‘principlism’ and committee- based review were imported from the United States. Professionalisation of research ethics (...) displaced other longer-standing ways of conceiving ethics connected with Taiwanese cultural traditions. Subsequently, the model and its discursive practices were extended to other disciplines. Regulation was also shaped by decolonizing dis- courses associated with asserting Indigenous peoples’ rights. Locating research ethics regulation within the language and practices of public policy formation and transfer as well as decolonization, allows analysis to move be- yond the self-referential and attend to the social, economic and political context within which regulation operates. 研究倫理規範甚至法制化的濫觴,過去在有些北美國家是為了回應其國內發生的醫學研究倫 理醜聞。但近年來,無論是發展中或已開發國家,往往是為了爭取國際醫學臨床試驗計畫能在 其國內執行、爭取美國相關研究經費、能在英語的國際期刊發表文章、或是因應國內相關社會變化。 以台灣來說,基於「原則主義」的醫學領域之研究倫理政策及規範,以及在研究機構內成立 委員會專責倫理審查的運作模式,可說完全移植自美國。這種運作模式及研究倫理的專業化, 不但逐漸取代過去已融合台灣文化的研究倫理觀쳀,且在這種運作模式下的倫理論述及實作, 更從醫學領域擴展至其他研究領域。在此同時,台灣的研究倫理規範之發展,也受到台灣原住 民族的去殖民化及群體權主張等影響。. (shrink)

Background Many indigenous people have died or been harmed because of inadequately monitored research. Strong regulations in Human Research Ethics (HRE) are required to address these injustices and to ensure that peoples’ participation in health research is safe. Indigenous peoples advocate that research that respects indigenous principles can contribute to addressing their health inequities. This scoping literature review aims to analyze existing peer reviewed and grey literature to explore how indigenous values and (...) principles from countries of Oceania are incorporated into HRE and the governance of research involving human participants. Methods A scoping literature review framework was used for this study. A search for peer reviewed and grey literature from Google, bibliographies, and electronic databases such as SCOPUS, SPRINGER, Medline (Ovid) and JBI Database of Systematic Reviews was conducted, limited to the years 2002–2020. Sixty (60) documents that focused on indigenous knowledge from Oceania region and HRE were included, from which key findings and themes were synthesized. Results Charting the data showed that more than half the eligible documents were peer-reviewed journal articles (54%). Other sources included: International Declarations on Human Research (8%); book chapters (8%); government documents (8%); HRE Guidelines or protocols (13%); news articles (7%) and PhD thesis (2%). The literature was from Australia, Cook Islands, Guam, New Zealand, Fiji, Samoa, Tonga and Vanuatu, some of which focused specifically on HREs in the Pacific Region. Issues emerging from the literature were grouped into five themes (i) indigenous and cultural principles of HRE; (ii) informed consent in indigenous settings in Oceania; (iii) vulnerability and minority status of indigenous populations exploited for research; (iv) research ethics governance for Oceania indigenous peoples; and (v) research ethics committees in Oceania. Respect, relationship building, and trust were priority indigenous HRE principles that encompass the principles of partnership, capacity building, reciprocity, and equality. Relationship building and trust imply the equal distribution of benefits for indigenous population and researchers. Conclusion Indigenous principles of HRE identified were interconnected and interdependent. Recommendations were to incorporate indigenous principles of research in HRE regulations and processes of all countries with indigenous populations. This is especially pertinent for emerging national research committees in LMIC countries, including Fiji and Tonga. Relationship building among researchers and indigenous populations is key to successful research with indigenous populations. HRE principles important for relationship building include respect that is reciprocal among researchers and indigenous people. Elements of the principle of respect highlighted are empathy, collaboration, sharing of benefits, reciprocity, appreciation, empowerment, protection, safety and awareness of culture and languages. Indigenous ontology from the Oceania region involves spirituality, connectedness to land, religious beliefs and a participatory approach to HRE and should be respected in research. An ethical governance mechanism of HRE is one that incorporates indigenous principles and applications for the purpose of maximizing the protection of the dignity and rights of indigenous peoples of Oceania. (shrink)

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 (...) class='Hi'>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)

This work presents the case of the Yanomami indigenous people from Brazil that were the object of US ethnography initiated in the 1960s. The research brought harmful repercussions to the life of the Indigenous people of Brazil for several decades, and it took more than 40 years until the beginning of a process of reparation involving the Brazilian government and American universities. Objective: to discuss the meaning of the return of Yanomami blood samples, as well as contributions (...) from the epistemologies of traditional Indigenous knowledge to the debate about research ethics and the structuring of means for the social control of researchers and the protection of participants in scientific studies, having as an example the Yanomami indigenous people from Brazil, subjected to noxious ethnography in the 1960s and the 1970s. This work used data reports recorded in secondary sources. In this article we argue that Bioethics needs to further diversify its epistemological foundations and to consider epistemologies and cosmologies beyond the frontiers of Western science, as the case of the abusive research involving the Yanomami indigenous people in Brazil reveals. We argue that traditional knowledge, such as those of indigenous and quilombolas, with their epistemologies and cosmologies, are fundamental for the election of less colonized and more efficient principles of research ethics, regarding the protection of the participants' rights in scientific studies. Traditional indigenous populations can teach us a great deal about doing research. (shrink)

Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations—including Indigenous Peoples—that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the (...) United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP‐based framework can complement the individual‐focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples’ rights and interests in genomic data. (shrink)

Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting (...) and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children. (shrink)

BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, (...) research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous (...) peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part. (shrink)

The introduction of the National Health and Medical Research Council guidelines for the ethical conduct of Indigenous health research: Values and Ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research (NHMRC, 2003), has prompted renewed debate about the ethical assessment of Indigenous health research in Australia. Concern has been expressed that these guidelines provide inadequate protection of Indigenous interests and that their introduction will result in a rolling back of (...) important Indigenous research reform gains of the past three decades. Another view is that the participatory focus of the Guidelines will help ensure that key Indigenous values are positioned as central to the development of research involving Indigenous interests. In this article we provide an overview of recent commentary on the Guidelines, and canvass practical proposals for their implementation into practice. In particular, we present a case for applying the Values and Ethics Guidelines as a foundation for establishing negotiated research agreements between Indigenous peoples and professional researchers at the local community level. The intention of this proposal is to give voice to the concerns and perspectives of Indigenous peoples through research, and to provide a framework for monitoring research after ethics approval has been granted. (shrink)

Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors and builds on (...) Indigenous Data Sovereignty (IDS) decolonial scholarship by Indigenous and non-indigenous researchers and its adaptations to health research involving racialized communities from former European colonies in the global South. We discuss strategies to practice equity, diversity, inclusion, accessibility and decolonization (EDIAD) principles in digital health. We draw upon and adapt the concept of Precision Health Equity (PHE) to emphasize models of data sharing that are co-defined by racialized communities and researchers, and stress their shared governance and stewardship of data that is generated from digital health research. This paper contributes to an emerging research on equity issues in digital health and reducing health, institutional, and technological disparities. It also promotes the self-determination of racialized peoples through ethical data management. (shrink)

Food ethics in the indigenous context is associated with a historical and profound relationship that indigenous groups have with nature. To address this relationship and identify the food uses associated with the maguey plant from a biocultural perspective among the Ngigua indigenous people living in the municipality of Tlacotepec de Benito Juárez in Puebla, the three main communities in the municipality of Tlacotepec de Benito Juárez that make use of the maguey plant were chosen. The study was (...) carried out with a qualitative approach, using a semi-structured interview as a research technique. The analysis carried out recognises the importance of the maguey plant as a biocultural resource for the Ngigua in a context of ethical deliberation. Among the food uses associated with the maguey plant, the following are identified: pulque (a drink of pre-Hispanic origin) and red worm. Women play an important role, participating in 80% of the preparation of both foods. The cultural environment of the maguey is a way of life that, in the case of the Ngigua people, represents a strategic element for survival. In times of food crisis, the study shows how ethnic food strategies in a context of ethical deliberation can constitute an alternative for the design of food solutions in territories with food shortages. (shrink)

This article seeks to advance connecting the two societal priorities of environmental protection and what has been called ‘Indigenous reconciliation’ through arts-based communication (and particularly arts-based research), to help engage and inspire people towards sustaining a healthy planet and a just society. Through lenses of social justice, decolonizing critique and holistic environmental ideologies, this work explores theoretical and practical, real-world intersections of environmentalist, Indigenous and arts-based imperatives and ways of knowing. The goal is twofold: first, to seek (...) to engage readers in viewing the colonization of the planet and its First Peoples as intimately related, and ultimately, to bring together diverse literatures to suggest ideas, language and a model to foster communication aimed at redressing both of those colonialist evils. To acknowledge this intersection of environmental and Indigenous approaches in arts-based settings, the term ‘environmental conciliation’ is proposed and defined as ‘environmental protection in ways that acknowledge, address, and aim to redress imbalances in power among Indigenous people and non-Indigenous settlers honestly, respectfully, openly, creatively and positively. (shrink)

The purpose of the article is to reveal philosophical ideas in the mythology and folklore of the indigenous peoples of North America. An important question: "Can we assume that the spiritual culture of the American Indians contained philosophical knowledge?" remains relevant today. For example, European philosophy is defined by appeals to philosophers of the past, their texts. The philosophical tradition is characterized by rational argumentation and formulation of philosophical questions that differ from the questions of ordinary language. However, the (...) problem lies in the term "philosophy", which belongs to the so-called "philosophical untranslatability" and has many definitions. The question of whether philosophy is exclusively a phenomenon of European culture is still controversial. In the article, the concept of philosophy is used in a broad sense, which allows the analysis of the intellectual heritage of the culture of the indigenous people of North America for philosophical ideas. Theoretical basis of the study consists of primary sources, which are limited due to the "documentary horizon". It contains myths about the Twins, ritual rhetoric, examples of dream interpretation practices and the practical wisdom of tribal chiefs. The Chronicle of "Vallamolum", or "the Red List", testifies to the special idea of the Indians about history and their own historicity. Analysis of cosmogonical and cosmological ideas reveals the special features of the anthropological ideas of the North American Indians. Combined with the philosophical ideas of the Puritan philosophy of the settlers of New England, this analysis allows us to explore in more detail the processes of acculturation. The study uses critical literature from scholars and leading researchers of the wisdom and philosophy of Native Americans, such as Michael Yellow Bird, J. Baird Callicott, Henry Wadsworth Longfellow, Dennis H. McPherson, Lewis Henri Morgan, Thomas M. Norton-Smith, J. Douglas Rabb, Paul Radin, Jon Ewbank Manchip White. The views of early American philosophers: R. Williams, W. Penn, R. W. Emerson, on the problem of the relationship between the culture of settlers and the indigenous people of North America are noteworthy. Originality lies in the application of historical and philosophical methodology, identifying the features of philosophizing in the spiritual culture and worldview of the indigenous people of North America. Conclusions. In the conclusions, the obtained results complement the history of the origin and development of philosophical thought of the early American philosophy. (shrink)

Researchers who propose projects about the human past frequently fail to distinguish between scientific value and the impact of both the proposal and the possible outcome for participant groups. It is only in recent years, and still in relatively few cases, that Aboriginal Australians have been directly involved in projects about themselves. The legacy of previous research experiences is a lingering distrust of ‘white’ researchers who visit communities briefly, take material/information, publish papers, and are rarely seen again. This distrust (...) is understandable but in turn becomes a barrier which many well-intentioned researchers are unable or unwilling to overcome. The expectations of the scientific community, particularly in the field of molecular biology, simply do not make allowances in terms of time or funding to build a trusting relationship between the researchers and the researched.Sensitivity to indigenous rights and expectations with regard to scientific research brings obligations to scientific investigators with which few are well prepared to deal. The direct involvement of indigenous people in research about themselves is essential to the development of trusting working relationships likely to result in valuable outcomes for all participants and increased opportunities for ongoing research.Well negotiated, co-operative research can provide information of value to both scientific investigators and local participants, but adequate and ongoing consultation, as well as the return of results to the communities in an accurate and appropriate form must be part of research strategy. For example, information about mitochondrial DNA studies may assist Indigenous Australian people, whose families were dispersed during colonisation by Europeans, to trace links with the past, find ‘stolen children’ and by association with other anthropological, linguistic and archaeological data, repossess some remnants of traditional knowledge, but researchers must ensure that participants have a realistic understanding of the limitations of the research. (shrink)

With case studies from North America to Australia and South Africa and covering topics from archaeological ethics to the repatriation of human remains, this book charts the development of a new form of archaeology that is informed by indigenous values and agendas. This involves fundamental changes in archaeological theory and practice as well as substantive changes in the power relations between archaeologists and indigenous peoples. Questions concerning the development of ethical archaeological practices are at the heart of this (...) process. (shrink)

ART and, in particular, IVF and ICSI, are essentially a laboratory experiment, but which, due to its specificity, goes beyond the disciplinary boundaries, explicitly acquiring an ethical-axiological dimension in the interaction zone of the members of a particular community involved in child-bearing. At the same time, it is noted that the activity and choice of a way to solve problems with childbirth has a characteristic severity, due to the traditions and level of civil and social maturity of a country, due, (...) among other things, to the level and achievements of technical equipment in this industry of knowledge and practice. According to foreign studies, about half of all subfertile people in developed countries are trying to overcome their infertility with the help of medicine, and research data indicate that the proportion of such individuals is growing. The most difficult problems of reproduction are associated with low quality of oocytes or low ovarian reserve ; aspermia and deep teratozoospermia, can not give hope to a couple to have genetically related offspring. However, donor programs create additional opportunities for social motherhood / paternity. Donation of oocytes is found in ART programs at least 3 times more often than donation of spermatozoa. At the moment, donation of gametes and embryos raises a number of ethical, legal, medical and socio-psychological issues that require competent support from experts of a wide range of specialists, as well as competent, non-commercial, primarily due to the interaction between donors and recipients. The analysis of possible modifications of family and kinship ties is based on the idea of transforming social relations, in which assisted reproductive technologies play a fundamental role, building a system of “new kinship and new family.” By entering into the intimate process of the birth of life and acting as a regulator of the composition of participants in this process through the stimulation of responsibility to present and future relatives, reproductive technologies affect the initial moral requirements in the community, redefining universal values based on the specific situation. Scenarios of childbearing through ART with the involvement of additional participants are possible in the context of the legal field, but legally fixed anonymity of the donor leaves many unresolved issues related to the problems of hereditary diseases, genetic abnormalities and epigenetic changes; in addition, there is a problem associated with the possibility of unintentional incest, as well as the difficulties of the child’s self-identification and the closeness of his genealogy. Solutions to these issues are postponed until later, thereby initiating future dramatic situations, ethical conflicts and dilemmas with a poorly predictable positive outcome. (shrink)

How does one decolonize and reclaim the meanings of research and researcher, particularly in the context of Western research? Indigenous communities have long experienced oppression by Western researchers. Is it possible to build a collaborative research knowledge that is culturally appropriate, respectful, honoring, and careful of the Indigenous community? What are the challenges in Western research, researchers, and Western university methodology research training? How have ‘studies’ – critical anti-racist theory and practice, cross-cultural (...) class='Hi'>research methodology, critical perspectives on environmental justice, and land-based education – been incorporated into the university to disallow dissent? What can be done against this disallowance? According to Eve Tuck and K Wayne Yang’s suggestion, this article did not use the concept of decolonization as a substitute for ‘human rights’ or ‘social justice’, but as a demand of an Indigenous framework and a centering of Indigenous land, Indigenous sovereign... (shrink)

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic (...) class='Hi'>research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. (shrink)

Efforts to build research capacity and capability in low and middle income countries (LMIC) has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/aids, even culturally specific codes for recruiting vulnerable populations such (...) as the San or Maori people. However, the same cannot be said for implementing research in global health. In an effort to build on this work, the Pakistan Institute of Living and Learning and University College London in the UK sought to better understand differences in beliefs, values and norms of local communities in Pakistan. In particular, they have sought to help researchers from high income countries (HIC) understand how their values are perceived and understood by the local indigenous researchers in Pakistan. To achieve this end, a group discussion was organised with indigenous researchers at Pakistan Institute of Living and Learning. The discussion will ultimately help inform the development of a cultural protocol for researchers from HIC engaging with communities in LMIC. This discussion revealed five common themes; (1) religious principles and rules, (2) differing concepts of and moral emphasis on autonomy and privacy, (3) importance of respect and trust; (4) cultural differences (etiquette); (5) custom and tradition (gift giving and hospitality). Based on the above themes, we present a preliminary cultural analysis to raise awareness and to prepare researchers from HIC conducting cross cultural research in Pakistan. This is likely to be particularly relevant in collectivistic cultures where social interconnectedness, family and community is valued above individual autonomy and the self is not considered central to moral thinking. In certain cultures, HIC ideas of individual autonomy, the notion of informed consent may be regarded as a collective family decision. In addition, there may still be acceptance of traditional professional roles such as ‘doctor knows best’, while respect and privacy may have very different meanings. (shrink)

Since the 1970s, anthropologists have moved into diverse workplaces, including private and public settings, that raise new issues for anthropology as a discipline as well as for the discourse on science more generally. In the context of increasing globalization, the articulation of new ethical dilemmas around such issues as technology, indigenous knowledge and rights, government regulation and bioethics among others, can and do inform and shape scientific public policy. The authors in this volume work in traditional research (...) centres and universities, as well as in private and public sectors, and across specialties from medical anthropology and social medicine to archaeology and cyberspace. They explore the dimensions of an ethical anthropology in today's world, and the unique contribution of anthropology to the sciences. (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)

IntroductionIn May 2006, the small group of doctoral students working on ecophilosophy at the Higher Institute of Philosophy at K.U.Leuven invited the Dutch environmental philosopher Martin Drenthen to a workshop to discuss his writings on the concept of wilderness, its metaphysical and moral meaning, and the challenge social constructivism poses for ecophilosophy and environmental protection. Drenthen’s publications on these topics had already been the subject of intense discussions in the months preceding the workshop. His presentation on the workshop and the (...) three critical responses by Wim Bollen, Glenn Deliège, and Richard Kover are published here in a thoroughly revised form on the basis of further and ongoing discussions about the issues involved. Three further contributions to the discussion are added: one by Nathan Edward Kowalski, a young Canadian philosopher who studied in Leuven and wrote his as yet unpublished dissertation on “Evil in Nature,” a second one by Kingsley Goodwin who is currently writing a dissertation on deep ecology at University College in Dublin and, finally, my own unsystematic thoughts inspired by Martin Drenthen’s provocative and stimulating hermeneutics of our postmodern understanding of nature and wilderness, as well as the diverse critical responses to Drenthen’s views by the other contributors. I owe gratitude to all of them for enriching my own ecophilosophical thought and enlarging its horizon although as my fragmentary reflections show at the cost of yet greater uncertainty and more questions about the possibilities of arguing for a radical environmentalist position. Such a position would somehow connect or ground our moral obligation to preserve genuine non-human otherness, wild and free nature, in the non-human meaning of such nature and in our essential need to be in direct and concrete contact with that field of wild non-human meaning because we ourselves belong to nature, because we are not only and purely civilized but are also and most fundamentally wild and free. Three fundamental questions need to be distinguished: the question about our moral obligations regarding nature and its preservation, the metaphysical question about the nature of nature or the meaning of nature, and the question of the metaphysical grounding of our morals in general, and of our moral obligation regarding nature in particular, in the nature or meaning of nature. The complex intertwinement between these three questions is at the heart of Martin Drenthen’s reflections.The authors contributing to the present discussion approach the various issues from markedly different philosophical backgrounds and concerns: critical theory, anthropology, analytic philosophy, phenomenology, hermeneutics, and deep ecology are all to some degree or other brought to bear on the question of what wilderness means for us, why we are fascinated by it and what it actually and in the first place is.Another interesting difference between the five respondents to Martin Drenthen’s wilderness-philosophy relates to the place from which they write: while the Canadians Richard Kover and Nathan Edward Kowalski have wilderness of some sort still close at hand, the Belgians Wim Bollen and Glenn Deliège write from a place which has been thoroughly domesticated, cultivated, and industrialised for a long time. Martin Drenthen himself, of course, writes from the same kind of place as these last two, which explains why he only refers to the wilderness that he has read about in novels, seen in movies, or experienced as recreated in the reserves of the Netherlands. The Irish Kingsley Goodwin writes perhaps from a third, intermediate place that is not wild anymore but still much more natural than Belgium or the Netherlands are.The differences in philosophical approach and concern combined with the difference of place generate a rich tapestry of perspectives and voices wrestling with the fundamental questions of our perceived homelessness and alienation from nature, our cultural discontent, our longing for and need for radical alterity, of immanence and transcendence, of who we are and where we belong, and more concretely of whether there is more to ground our efforts to preserve nature than enlightened self-interest and subjective preference. Martin Drenthen deserves praise for inaugurating this fruitful discussion with his intriguing and highly paradoxical effort to hybridize a postmodern deconstruction of the idea and ideal of wilderness as unspoilt and true nature on the one hand with a new metaphysics of wilderness on the other. Arne Naess, who is generally regarded as the founding father of deep ecology, pointed out the positive and stimulating role that vagueness in the expression of ideas can play in political and philosophical debate. Such general and vague but highly suggestive expressions as ‘all life is one’ are not empty at all, as is often claimed; they are rather full of possibilities of ‘precisation’ and differentiation. Drenthen’s wilderness-philosophy is certainly not vague to the degree of ‘all life is one,’ but his expositions are similarly pregnant with a wealth of further questions, precisations, distinctions, and conceptual clarifications. Good examples of different kinds are to be found in the contributions of Nathan Edward Kowalski and Richard Kover. Kowalski points out that Drenthen’s notions of culture and wilderness need to be made more precise by distinguishing them from the notions of civilization and wildness such that wild cultures become a conceptual possibility. Richard Kover takes the lead from Drenthen’s question about the reason for our postmodern fascination for wilderness to confront it with our primordial fascination in terms of the dependence in the evolution of our subjectivity and our consciousness on the focused perceptual attention on wild forms.Glenn Deliège situates Martin Drenthen’s wilderness-philosophy in its original context of the Dutch debate on the preservation of nature, in particular on the new wilderness paradigm. According to this paradigm, the nature to be preserved should be true and pure, truly natural and wild nature, that is nature outside of and free from the cultivating and domesticating influence of humans. In the Netherlands, however, such nature no longer exists; it can only be preserved after it has first been artificially recreated. Deliège gives an informative summary account of the highly charged three-cornered debate between the adepts of this wilderness-paradigm, the proponents of the more traditional form of conservation of remnants of the typical European landscapes created by pre-industrial farming practices and the modern technocratic functionalists. This debate makes obvious that there are quite different views of the nature of nature and its value. Enter social constructivism: the contested nature of nature is nothing more than a social construct, an idea in a collective mind. The contestation itself is a struggle for authority and power between different such social constructs, any claim to scientific objectivity and objective truth for one’s image of nature is an arrogation of a truth which doesn’t exist and is potentially oppressive by silencing other views. Nature then is up for the grabs of politics, political negotiation, and compromise between various interest groups who all want to get some benefit from nature, some use-value.The problem with Drenthen’s effort to articulate a normative concept of nature which cannot be deconstructed in this way is the extreme formality and emptiness of his metaphysical concept of wilderness as that which is always ‘beyond’, always ‘more’ and which can never be exhausted by any image and construction of nature. Any more concrete determination is mere appearance; the thing in itself is a border concept of that which in fact cannot be grasped conceptually. Glenn Deliège is critical of this formality and emptiness from which it will be impossible to derive any concrete guidance for our conservation practices. He then goes on to defend the Arcadian tradition of our appreciation of nature as giving us a historically well-grounded orientation for those practices. Of course that Arcadian tradition is obviously a cultural construction but that doesn’t make it completely arbitrary and contingent since it is itself ultimately grounded in and open to modification by our concrete sensuous experiences of nature.Deliège here raises the very important issue of the relation between our concrete perceptual and bodily experiences in and with nature and our concepts and metaphysical images of nature. Drenthen himself approaches this issue from the hermeneutical perspective of our need to make sense of our experiences and to articulate their meaning. His confrontation with social constructivism and his effort to salvage something from its relativizing acid lead him, however, into the direction of a highly abstract and empty concept of wilderness.Richard Kover shows that perception is, indeed, the key to a radical critique of social constructivism. He does this with the help of the ecological anthropology of Paul Shepard, the structuralist anthropology of Claude Levi-Strauss and the phenomenology of Maurice Merleau-Ponty. It needs to be said here that Kover takes his leave from an unpublished paper by Martin Drenthen with the title “How to appropriate wilderness appropriately?” – the paper is accessible though on Drenthen’s web-site - in which Drenthen comments and reflects upon three contemporary wilderness-tales, one of them being Werner Herzog’s much-discussed documentary on Timothy Treadwell, an American environmentalist drop-out who lived thirteen summers among wild grizzlies in the Alaskan wilderness before being killed together with his girlfriend by a grizzly bear.Kover tries to show that we are not imprisoned in the mirror-cabinet of our mind or of our human sociality. To make his case, he starts from Paul Shepard’s thoughtful observation that the evolutionary emergence of the mind did not remove us from the natural world but actually connected us deeper with it. Through our mind we evolved more fully into it because our mind is primordially in our senses and in the ability to articulate a perceptual world. The natural world in the form of the system of natural species and their relations is the primary model for perceptual discriminations, for the fundamental discovery of order with its twin-aspects of distinction and discontinuity on the one side and relations and continuity on the other side. Our cognition is essentially perceptually based, our subjectivity is primordially informed by our inherence in the sensible world. Perceptual cognition is inherently intentional and relational, it is not an autonomous mental construction, it is rather in the world and informed by that which is perceived. The other is always intertwined with the subject. We are always already hooked up with the world, with the others, before we start reflecting, thinking, and conceptualizing. This is one of the major themes in Shepard’s work: what this insight means with regard to our relations to non-human otherness, in particular to our perceptual encounter with wild animals. In our encounter with non-human otherness, we are confronted with an essentially ambiguous sense of both affinity and disjuncture. Wild animals demonstrate to us that we are not homeless or alien to this world, that we fundamentally belong to it and are part of it. Their difference, however, shows us that there are different perspectives and ways of being in the world. “Thus the encounter with non-human others inform humans that we are both of the world and simultaneously not the world and there are horizons of significance beyond our own perspective.”Nathan Edward Kowalski comes to a similar conclusion when he situates our morality in the larger moral order of wild nature. According to Kowalski it is indeed a moral order though not our own, an Other to our morality but not simply a negative one. It is, as Drenthen says, a highly paradoxical amoral morality. But what can it mean to speak of morality here? For Kowalski it means that the issue is not merely the theoretical recognition and acknowledgment of axiological transcendence, of non-human values out there, but whether we will appropriately conform to and comport ourselves towards that axiological transcendence so that we can find a human homeland in wild nature instead of turning it into a wasteland. The question then is, how to fit our own human morality into this larger order and greater reality, to subordinate it to that greater reality as a part of it and encompassed but not denied by it so that we can be moral and natural at the same time, tender carnivores hunting the sacred game. Indigenous people follow a moral protocol in their relationship with non-human others which acknowledge and respects their autonomy, their alterity, and the sacred mystery of their different ways of being. They are not befriended but some of them are hunted and eaten – as an exchange in the gift-economy of nature.The problem of the homelessness and alienation from nature is discussed by Wim Bollen from the radically different vantage point of critical theory. In Adorno’s and Horkheimer’s Dialectic of Enlightenment the human story unfolds as a tragic effort to liberate ourselves from nature and to become fully human through rational control when in the end this effort turns against ourselves and instead of liberation and human flourishing we get social domination and repression of our natural needs. The frustrations and mutilations imposed upon us by a repressive civilization give rise to the regressive desire for a return to a natural existence. Referring to the myth of Odysseus and Circe as interpreted by Adorno and Horkheimer, Wim Bollen equates such a natural existence with animal life. In the light of contemporary knowledge about primitive existence, however, this equation is highly problematic. Palaeolithic foragers were already fully human in all respects. A life without civilization need not be an animal-existence.According to Adorno/Horkheimer, our subjectivity and autonomy have to be wrested from animal-nature through an exertive struggle that cannot but proceed by a threefold strategy of domination: the domination of non-human otherness, of human others, and of our own inner nature. The siren song of nature consists in the temptation to give up that struggle for the promise of an unreflective, non-alienated natural existence without toil.When Odysseus’ men give in to Circe’s seduction they are, however, not transformed into wild animals but into swine. According to Bollen this signifies that we cannot re-wild ourselves, that we remain imprisoned in civilization, either as master-subjects or as domesticated animals. Bollen, by the way, like Drenthen, does not distinguish conceptually between civilization and culture. Since re-wilding for Bollen means the impossibility of returning to animal-existence, which is actually the impossibility of becoming another species since biologically we are animals already, to be imprisoned in civilisation means nothing else than to be imprisoned in our humanity. The fact that we cannot become wild animals again – according to Paul Shepard, however, we are still wild animals – is indeed, as Bollen stresses, a trivial form of alienation. A more meaningful concept of alienation which can be put to critical use must refer to a culturally and historically determined frustration and deficit inside the cultural order that is to be overcome not by an impossible regression but by progressive politics leading beyond the three intertwined forms of domination. Not back to nature but forward towards a reconciliation of culture with nature! Such a reconciliation would neither collapse culture into the immanence of nature nor submerge nature into the transcendence of culture. According with the three forms of domination it would be a three-dimensional form of reconciliation.Odysseus’ men did not got what they thought were promised them: the complete liberation from the burden of being autonomous subjects, of being civilized, but they got something worthwhile, namely a certain from of pleasure, a limited and provisional relief and escape. Bollen sees a critical potential in these piggish pleasures after all and consequently even in the siren song of nature since these pleasures were only experienced because Odysseus’ men gave in to it. But one has to give in to this siren song critically if it is to unfold its liberating potential. The problem with pleasure though in bourgeois society is that it is necessarily betrayed, instrumentalized and sold.Kingsley Goodwin’s paper starts by defending deep ecology against the charge of asserting a naïve and dogmatic metaphysics of nature. For convenience sake, but not quite unproblematically, he identifies deep ecology with the environmental thought of Arne Naess. A metaphysics of nature for Naess is always part of a personal worldview. Worldviews which are partly inspired by ecology Naess calls ecosophies. Naess always stresses the personal character of such a worldview and the irreducible plurality of them. It used to be a common misunderstanding of the platform of deep ecology which Naess conceived together with George Sessions that it expressed in a condensed form the metaphysical beliefs of deep ecology. Naess’ intention, however, was to try to articulate in a general fashion the basic viewpoints on which the supporters of the deep ecology movement agreed. It would be possible then to derive these viewpoints from quite different worldviews. In light of this, I think, that Goodwin’s characterisation of the platform as “pragmatic and activist” is not quite appropriate.Goodwin goes on to compare Drenthen’s conception of wilderness and wildness with the similar position developed by Neil Evernden in his book The Social Creation of Nature. He like Naess in his personal ecosophy stresses the crucial role of perceptual experience of wild otherness to find an antidote to the relativity and contingency of our interpretations of nature. Evernden refers to studies on child development to argue for a non-dualistic and relational conception of the self, similar to Naess’ relational ontology. According to Goodwin, Drenthen, in spite of his hermeneutical approach remains too much indebted to the Western subject/object-dualism. The object, in this case wild nature, is pure otherness.With regard to a compost heap, Goodwin shows that we are not separated from nature by an inseparable gulf, that nature is close at hand, and that we can experience and explore it, appreciate the complex play of identity and difference it consists of, the exchanges and transformations and that we can identify with the organisms involved in these exchanges.*The proceeding remarks only highlight some of the prominent themes and considerations in the various contributions to this topical issue of Ethical Perspectives. Hopefully the reader will feel invited and enticed to read the articles themselves, starting, preferably of course, with the essay by Martin Drenthen, who sparked off this lively discussion on the moral meaning of wild nature. I am honoured and pleased to be able to introduce these rich explorations by such talented young environmental philosophers who are eager to develop environmental philosophy further and lead it into new directions. They all have to wrestle with and find answers to the challenge postmodern deconstruction and social constructivism pose for environmental philosophy. In the face of that challenge, it is even more difficult than it already was to provide solid and convincing arguments for the defence of wild and free nature beyond merely pragmatic arguments in terms of its utilitarian value for us. The reason for that defence is not clear-cut and proves to be just as evasive as the moral meaning of nature itself. But neither that reason nor that meaning are mere phantoms and mirages that vanish when we approach them and try to grasp them. They are more substantial, even if they will never have the solidity of a mathematical proof or a scientific measurement. Their locale is the lifeworld which from the point of view of scientific and logical precision and clarity is a messy place where subject and object, reason and heart, fact and value, experience and thought and, yes, nature and culture cannot be clearly separated. This has important consequences for environmental philosophy and its methodology. Conceptual analysis and logical argumentation have to become sensitive to the richness of experience in the lifeworld and to the diverse efforts of its articulation: i.e., they have to open themselves up and maybe even to subordinate themselves to phenomenological and hermeneutical approaches. For me personally this is one of the most important conclusions I draw from the discussion presented here. (shrink)

Background Biomedical and ethnographic studies among indigenous people are common practice in health and geographical research. Prior health research misconduct has been documented, particularly when obtaining genetic material. The objective of this study was to crossmatch previously published data with the perceptions of the Waorani peoples about the trading of their genetic material and other biological samples. Methods We conducted a mixed methods study design using a tailored 15-item questionnaire in 72 participants and in-depth interviews in 55 (...) participants belonging to 20 Waorani communities about their experiences and perceptions of participating in biomedical research projects. Additionally, we conducted a systematic review of the literature in order to crossmatch the published results of studies stating the approval of an ethics committee and individual consent within their work. Results A total of 40 men and 32 women, with a mean age of 57 ± 15 years agreed to be interviewed for inclusion. Five main categories around the violation of good clinical practices were identified, concerning the obtention of blood samples from a recently contacted Waorani native community within the Amazonian region of Ecuador. These themes are related to the lack of adequate communication between community members and researchers as well as the voluntariness to participate in health research. Additionally, over 40 years, a total of 38 manuscripts related to the use of biological samples in Waorani indigenous people were published. The majority of the studies did not state within their article obtaining research ethics board approval, and 71% did not report obtaining the informed consent of the participants prior to the execution of the project. Conclusion Clinical Research on the Waorani community in the Ecuadorian Amazon basin has been performed on several occasions. Unfortunately, the majority of these projects did not follow the appropriate ethical and professional standards in either reporting the results or fulfilling them. The results of our investigation suggest that biological material, including genetic material, has been used by researchers globally, with some omitting the minimum information required to guarantee transparency and good clinical practices. We highlight the importance of stating ethics within research to avoid breaches in research transparency. (shrink)

The 1992 Convention on Biological Diversity (CBD) and its 2010 Nagoya Protocol brought about a breakthrough in global policy making. They combined a concern for the environment with a commitment to resolving longstanding human injustices regarding access to, and use of biological resources. In particular, the traditional knowledge of indigenous communities was no longer going to be exploited without fair benefit sharing. Yet, for 25 years after the adoption of the CBD, there were no major benefit sharing agreements that (...) led to significant funding streams for indigenous communities. This changed with the signing of the Rooibos Benefit Sharing Agreement in South Africa, described in this paper. As the authors report, the Rooibos Agreement is a superlative in two respects. It is the biggest benefit sharing agreement between industry and indigenous peoples to date. It is also the first industry-wide agreement to be formed in accordance with biodiversity legislation. This article is a co-production between traditional knowledge holders, the lawyer who represented their interests, the Co-Chair of the Nagoya Protocol negotiations, and an ethicist who analyzed the major challenges of this historic agreement. With no precedent in the benefit sharing world, the agreement stands as a concrete example of the ‘art of the possible.’ Although the rooibos case is unique in a number of aspects, the experience offers many transferable insights, including: patience; incrementalism; honesty; trust; genuine dialogue; strong legal support; a shared recognition that a fair, win-win deal is possible; government leadership; and unity amongst indigenous peoples. Such ingredients of success can apply well beyond southern Africa. (shrink)

This forward-looking resource offers readers a modern contextual framework for conducting social science research with indigenous peoples. Foundational chapters summarize current UN-based standards for indigenous rights and autonomy, with their implications for research practice. Coverage goes on to detail minimally-invasive data-gathering methods, survey current training and competency issues, and consider the scientist’s role in research, particularly as a product of his/her own cultural background. From these guidelines and findings, students and professionals have a robust base (...) for carrying out indigenous research that is valid and reliable as well as respectful and ethical. Among the topics covered: -/- · Cultural theories and cultural dominance. -/- · The legal framework of research in indigenous contexts. -/- · The role of language within indigenous peoples’ cultural rights. -/- · Methodology: how to optimally collect data in the field. · Researchers’ influence and philosophy of science. -/- · Learning how to prepare research in indigenous contexts. -/- Research Methods in Indigenous Contexts is an important reference benefitting a wide audience, including students and researchers in the social sciences, humanities, and psychology; decision-makers of NGOs and GOs that act with regard to humanitarian aid, for tourism projects, or any other contingency with indigenous contexts; and policymakers interested in the aspects of human activity upon which indigenous cultural concerns are based. (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)

Decolonization requires critical attention to settler logics that reinforce settler-colonialism, yet settler communities, as a rule, operate without a collective sense of identity and history. This article, provoked by Māori protocols of encounter, explores the necessity of developing a sense of collective identity as precursor to meeting in settler-Indigenous politics. It argues that the ability, desire, and experience of being unmarked as a social group—apparent in paradigmatic approaches to engaging social difference in settler communities—is at the heart of the (...) particularity of settler group identity and also stands at the heart of countless failures to meet in settler-Indigenous politics. This essay thus seeks to mark the particular ground of this unmarkedness of settler identity in Western philosophies that set being unmarked as both ontology and ideal; the dominance of settler communities in places of settlement; and the willful forgetting of the colonial histories brought about by such dominance. (shrink)

The popularity of ‘food sovereignty’ to cover a range of positions, interventions, and struggles within the food system is testament, above all, to the term’s adaptability. Food sovereignty is centrally, though not exclusively, about groups of people making their own decisions about the food system—it is a way of talking about a theoretically-informed food systems practice. Since people are different, we should expect decisions about food sovereignty to be different in different contexts, albeit consonant with a core set of principles (...) (including women’s rights, a shared opposition to genetically modified crops, and a demand for agriculture to be removed from current international trade agreements). In this paper we look at the analytical points of friction in applying ideas of food sovereignty within the context of Indigenous struggles in North America. This, we argue, helps to clarify one of the central themes in food sovereignty: that it is a continuation of anti-colonial struggles, even in post-colonial contexts. Such an examination has dividends both for scholars of food sovereignty and for those of Indigenous politics: by helping to problematize notions of food sovereignty and postcoloniality, but also by posing pointed questions around gender for Indigenous struggles. (shrink)

Recently, Indigenous commentators have begun to analyse the way in which institutional Research Ethics Boards engage with Indigenous researchers and participants, respond to Indigenous peoples’ concerns with academic research activities, and scrutinise the ethics proposals of Indigenous scholars. Of particular concern for Indigenous commentators is that the work of REBs often results in the marginalisation of Indigenous approaches to knowledge construction and dissemination, especially in relation to the vexed issue of informed consent. (...) Based on analysis of the results of research with Indigenous researchers and research participants, this paper argues that institutionalised REBs’ preference for ‘universal’ and ‘individualised’ approaches for determining ethical research conduct marginalises Indigenous approaches to ethical research conduct. The paper concludes by calling for a decolonisation of REB processes through recognition of the validity of communal processes for attaining the informed conse... (shrink)

The COVID-19 pandemic has had a global effect. The disproportionate impact on Indigenous peoples and racialized groups has brought ethical challenges to the forefront in research and clinical practice. In Canada, the Tri-Council Policy Statement (TCPS2), and specifically the principle of justice, emphasizes additional care for individuals “whose circumstances make them vulnerable”, including Indigenous and racialized communities. In the absence of race-based data to measure and inform health research and clinical practice, we run the risk of (...) causing more harm and contributing to ongoing injustices. However, without an accepted framework for collecting, maintaining, and reporting race-based data in Canada, more guidance is needed on how to do this well. Importantly, a framework for collecting race-based data should build on existing guidance from Indigenous and other structurally marginalized communities, the TCPS2, recommendations from the World Health Organization, and involve relevant stakeholders. In this paper, we describe historical examples of unethical studies on Indigenous and racialized groups, discuss the challenges and potential benefits of collecting race-based data, and conclude with objectives for a pan-Canadian framework to inform how race-based data is collected, stored, and accessed in health research. (shrink)

This article explores the rehabilitation of the ethical dimension of human interactions with nature, using cross-cultural perspectives in Africa. Cross-cultural comparison of indigenous concepts of the relationship between people and nature with contemporary environmental and scientific issues facilitate the rehabilitation, renewal and validation of indigenous environmental ethics. Although increasing attention is being given to the environmental concerns of non-western traditions, most of the related research has centered on Asia, Native American Indians and Australian Aborigines with little attention (...) being paid to Africa. However, this study has confirmed that, like other multi-cultural traditions, African indigenous traditions contain symbolic and ethical messages that are passed from generation to generation in order to ensure respect and compassion for other living creatures. The article shows, however, that not all indigenous knowledge is environmentally friendly. Indigenous and modern environmental ethics alike have something to teach as well as something to learn. (shrink)

The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. Invited by local Aboriginal community (...) leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. Focus groups with Aboriginal community members were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley – Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning – milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge. (shrink)

Since the inception of their discipline, anthropologists have studied virtually every conceivable aspect of other peoples' morality - religion, social control, sin, virtue, evil, duty, purity and pollution. But what of the examination of anthropology itself, and of its agendas, epistemes, theories and praxes? Conceived as a response to Patrick Tierney's hugely inflammatory book Darkness in El Dorado , whose allegations of immoral and negligent anthropological research in South America caused a storm of protest and debate, the book (...) combines theoretical papers and case studies from eminent scholars including Steven Nugent, Marilyn Silverman and Veronica Strang. Showing how the topic of ethics goes to the heart of anthropology, it raises the controversial question of why - and for whom - the anthropological discipline functions. (shrink)

In 1970 a coalition of student activists opposing the Vietnam War circulated documents revealing the involvement of several prominent social scientists in U.S. counterinsurgency activities in Thailand--activities that could cause harm to the people who were the subject of the scholars' research. The disclosure of these materials, which detailed meetings with the Agency for International Development and the Defense Department, prompted two members of the Ethics Committee of the American Anthropological Association to issue an unauthorized rebuke of the accused. (...) Over the next two years, the AAA agonized over the allegations and the appropriate response to them. Within an academic community already polarized by the war, political and professional acrimony reached unprecedented levels. Although the association ultimately passed a code of ethics, the key issues raised in the process were never fully resolved. Now back in print, Eric Wakin's Anthropology Goes to War is the first comprehensive study of what became known as the Thailand Controversy--and a timely reminder of a debate whose echoes may be heard in our own time. (shrink)

In recent years, critical theorists such as Amy Allen and Robert Nichols have aimed to “decolonize critical theory,” by which they mean to make the tradition of critical theory less hostile to, and more compatible with, the ideas and movements of Indigenous peoples. In this article, however, I argue these efforts have failed to consider the relationship of two key elements of critical theory with Indigenous thought: that all normativity is generated immanently to historically and socially located struggle, (...) and that normativity is negatively defined. These two elements, I argue, are not fully endorsed in the work of many Indigenous thinkers. By drawing on the work of a diverse group of contemporary Indigenous scholars, I show, first, that nature is generally a relevant normative category in Indigenous thinking in a way that is irreducible to historical location. Second, I argue that for many Native scholars, right action is not simply a matter of resisting colonialism. While resistance features heavily, of course, I suggest that Indigenous thinking often includes a substantive positive vision of living well that has not—as of yet—been considered by critical theorists. (shrink)

Indigenous critiques of postcolonialism are as diverse as First Nations or Original Peoples communities themselves. Yet, within that diversity, there is often claimed to be a set of core universal teachings. My article engages this field in a three-step process that begins with examining the incorporation of two Indigenous critiques into a Handbook of Qualitative Research edited by Norman Denzin and Yvonna Lincoln. Focusing on justice through their lens of an ethics and politics of interpretation, Denzin and (...) Lincoln simultaneously reject much of what they claim critical realism advocates. They then deny any significant emancipatory potential to critical realism. This article immanently critiques their denial. In doing so it argues a case, on the one hand, for the explanatory potential of dialectical critical realism and the philosophy of meta-Reality both generally and in the case of postcolonialism as decolonizing praxis. On the other hand, viewing Indigenous critiques within an interpretive paradigm risks ensnaring them within modernist dualist categories, postmodernist unconstrained deconstruction or poststructuralist formless flux. Such a reading thus restricts their capacity to contribute to depth-totalizing praxis. I introduce a critical realist reading of Indigenous critiques and conclude that the political programme of emancipation is strengthened through an interweaving of critical realism and Indigenous political philosophy. (shrink)

In this study, we discuss the colonial project as an eliminatory structure of indigenous ways of knowing and doing that is built into Canadian social and health institutions. We elaborate on the role nursing plays in maintaining systemic racism, marginalization and discrimination of Indigenous Peoples. Based on historical practices and present‐day circumstances, we argue that changing language in research and school curriculums turns decolonization into what Tuck and Yang call a ‘metaphor’. Rather, we propose decolonization as a (...) political project where nurses acknowledge their involvement in colonial harms and disrupt the assumptions that continue to shape how nurses interact with Indigenous people, including knowledge systems that perpetuate colonial interests and privilege. Decolonization requires nurses to understand the colonial practices that led to dispossession of land, erasure of knowledge, culture and identity, while upholding indigenous ways of knowing and doing in health, healing and living. As a political manifesto that liberates indigenous life from oppressive structures of colonialism and capitalism, The Red Deal is presented as a visionary platform for decolonization. The aim of this study is to articulate three dimensions of caretaking within The Red Deal as a framework to decolonize nursing knowledge development and practice. Based on the philosophical dimension embedded in The Red Deal that revoke norms and knowledge assumptions of capitalism that destroy indigenous ways of knowing and doing, we underscore an approach toward decolonizing nursing. Our approach rejects the apolitical nature of nursing as well as the unilateral western scientific knowledge approach to knowledge development and recognition. A critical emancipatory approach that addresses the socio‐political and historical context of health care, recognizes dispossession of land and adopts a ‘multilogical’ vision of knowledge that gives space for representation and voice is needed for true decolonization of nursing. (shrink)

As part of a (bio)colonial project, the biological information of Indigenous Peoples has historically been under scientific scrutiny, with very limited benefits for communities and donors. Negative past experiences have contributed to further exclude Indigenous communities from novel developments in the field of omics research. Over the past decade, new guidelines, reflections, and projects of genetic research with Indigenous Peoples have flourished in Australia, providing opportunities to move the field into a place of respect and (...) ethical relationships. This review explores the ethical and cultural implications of the use of biological samples from Indigenous communities in biomedical research. A structured framework outlining emerging topics of interest for the development of respectful omics research partnerships with Indigenous Australians is presented. This paper highlights aspects related to Indigenous governance, community and individual consent, respectful handling of biological samples, data management, and communication in order to protect Indigenous interests and rights and to promote communities’ autonomy. (shrink)

In colonial states and settings, constitutional arrangements are often forged within contexts that serve to maintain structural racism against Indigenous people. In 2013 the New Zealand government initiated national conversations about the constitutional arrangements in Aotearoa. Māori leadership preceded this, initiating a comprehensive engagement process among Māori in 2010, which resulted in a report by Matike Mai Aotearoa which articulated a collective Māori vision of a written constitution congruent with te Tiriti o Waitangi by 2040.This conceptual article explores the (...) Matike Mai Aotearoa report on constitutional transformation as a novel means to address structural racism within the health system as a key domain within the constitutional sphere. Matike Mai suggests alternative conceptual structural formations through its focus on the kāwanatanga, the relational and the tino rangatiratanga sphere. This framework is informed by a range of Indigenous ethical values such as tikanga, belonging, and balance that can usefully inform the redesign of the health sector.We assert that constitutional transformation and decolonization are potentially powerful ethical sources of disruption to whiteness and structural racism. We argue that, to eliminate entrenched health disparities, change processes need to be informed by the Indigenous inspirations expressed in the Matike Mai report. (shrink)

During the past four years, the International Institute for Indigenous Resource Management has sponsored and co-sponsored a series of discursive roundtables on the ethical, legal, social, and cultural implications of genetic research on Indian tribes and Indian people. The deliberations of the tribal leaders, legal scholars, researchers, representatives of non-governmental organizations, and others who participated in these roundtables laid out a range of barriers to informed tribal participation in genetic research and proposed a policy, legal, and scientific (...) research agenda to fill gaps in knowledge and to otherwise support indigenous peoples' decision-making on genetic research issues.An understanding of Native American attitudes toward genetic research on their community cannot be fully understood absent an appreciation of the interrelationship among native peoples, genetic research, and the landscape, contaminated as it is by governmental and other factors. The deliberations described herein present invaluable insights into tribal attitudes toward genetic research that have application to ethical, legal and social aspects of forensic DNA databanks, sample collection and retention, and, in particular, issues of secondary non-forensic uses of such DNA. (shrink)

Increasingly, the role of health research in improving the discrepancies in health outcomes between Indigenous and non-Indigenous populations in developed countries is being recognised. Along with this comes the recognition that health research must be conducted in a manner that is culturally appropriate and ethically sound. Two key documents have been produced in Australia, known as The Road Map and The Guidelines, to provide theoretical and philosophical direction to the ethics of Indigenous health research. (...) These documents identify research themes considered critical to improving the health of the nation’s Indigenous peoples. They also provide values that, from an Indigenous perspective, are foundational to an ethical research process. This paper examines these research themes and values within the context of a current longitudinal birth cohort study of Indigenous infants and children in south-west Sydney: the Gudaga Study. Considerable time and effort have been invested in being true to the values stated in these documents: reciprocity; respect; equality; responsibility; survival and protection; and spirit and integrity. We have learnt that it is vital to be true to these values when conducting Indigenous health research—to quite literally “walk the talk”. (shrink)

Decolonizing aesthetics requires a philosophical reexamination of art and cultural representation to address ethical conflicts and the legacy of colonial biases. This study explores the suppression and marginalization perpetuated by colonial aesthetics, with a focus on gender, race, and cultural diversity. Drawing on postcolonial theories, the research highlights the disparities and systemic exclusions within artistic traditions, advocating for decolonized practices that restore and celebrate suppressed cultural expressions. Case studies such as Indigenous Futurism and exhibitions promoting the art of (...) formerly colonized communities illustrate the practical application of decolonization efforts. Using primary data analyzed through Smart PLS software, the study examines correlations and causal relationships between decolonization initiatives and shifts in aesthetic valuation. The findings reveal both challenges and opportunities in dismantling colonial legacies, emphasizing the role of art education, public workshops, and community engagement in fostering awareness and inclusivity. Artists and institutions play a pivotal role in promoting decolonized aesthetics by addressing historical biases and amplifying marginalized voices. Decolonization emerges as an ongoing ethical and cultural practice aimed at dismantling colonial power structures in art and aesthetics, ensuring a more equitable representation of global artistic traditions. (shrink)

Institutional ethical oversight of research involving humans conducted at Canadian universities is guided by the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2). Beginning in 2010, the TCPS2 included a chapter specific to research involving First Nations, Inuit, and Metis Peoples of Canada, which is intended to provide a framework for the ethical conduct of research with Indigenous communities. These institutional guidelines reflect progress in the way research is done with Indigenous (...) communities. However, concerns remain about the ways in which these guidelines are taken up, interpreted, and operationalized by institutional research ethics boards, which include creating tensions and challenges for Indigenous scholars conducting research together with their own communities. The purpose of this paper is to describe some of the challenges and conflicting expectations we faced as an Indigenous doctoral student and non-Indigenous academic supervisor, navigating the axiological differences between institutional ethical oversight and community relational ethics with the aim of supporting other Indigenous scholars who may experience similar challenges and influencing policy change and relational engagement in ethical review processes in university settings. We outline the various critiques of institutional oversight of Indigenous research, share several examples of how we experienced the tensions and potential/actual harm that institutional power interference caused in the review process and how we worked through them, and demonstrate how, in our experience, it was not bureaucratic institutional procedures that protected community participants from risk, it was community relationships. We conclude by discussing implications and offering our suggestions for change. (shrink)