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)

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)

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)

Contemporary notions of what constitutes tribal self government for Indigenous Peoples in the legal systems of the nation-states Canada, New Zealand and the United States of America have their origins in philosophies and theories developed by European nation-states generally, in relation to their colonial expansion into what is now called the Americas. This thesis examines the nature of these theories, and how they have formed the basis for legal precedent and public policy in the three nation-states. A representative (...) analysis of three contemporary issues will serve to illustrate the outcome of this legal/political history. I look at three sites. These are the British Columbia Treaty Process in Canada, the Waka Umanga legislation in New Zealand, and legal developments arising from the Indian Reorganization Act in the United States. Full sovereignty from an Indigenous Peoples worldview existed for Indigenous nations, and with it, self government. The notion of self government as a viable and contemporary public policy initiative is well grounded in law and history. It would seem that current initiatives to acknowledge this inherent right are more about preserving colonial hegemony rather then engaging in honest negotiation. Current initiatives are converging into a single public policy goal; namely the corporatisation of Indigenous Peoples legal personality and self governing capacity. What used to be distinct nation-state development now seems to be a four nation-state (CANZUS) unified plan being implemented on four different fronts. Clearly, from the legal history, self government is something fundamentally different from self-management. The advent of Legal Positivism has played a significant role in assumptions that inherent sovereignty and self government never existed under European legal systems. The framework of tribal self governance must be viewed in the context of the values of the specific People to be a true expression of an Indigenous Nation exercising self government. This fundamental distinction can be traced back to the legal history. The foundational laws regarding interactions with Indigenous Peoples were developed under theories of natural law. The contemporary state practice is conducted under positivist law, with a nod toward developing human rights standards. Only through continued advocacy for the legal recognition of inherent rights will the nation-states be challenged on their self management agenda. (shrink)

This article explores the meaning of inclusive participation in global conservation decision-making processes. It draws on data collected in collaborative ethnographic research of the latest World Conservation Congress (WCC) held in 2008 in Barcelona, Spain. We argue that despite a discernible shift towards the incorporation of indigenous rights and indigenous peoples' representatives within the conservation equation, many challenges to full participation still exist for both indigenous peoples and other local resource users who may be affected (...) by conservation governance decisions. Several conditions exist at a global scale that limit democratic participation, including the unequal power relations between indigenous peoples and the global north, which limits the space for indigenous inclusion, the democratic deliberation that is often treated as a checkbox item, the limited resources to facilitate broad inclusion (in terms of both monetary and cultural capital), and the political challenges of legitimacy for some at more local scales, such as the concern of who represents whom at the global scale. We recognise effort has been given to expanded participation in global conservation governance, but inclusive and deliberative participation is still limited within IUCN and among other conservation NGOs. (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)

In this paper I appropriate the philosophical critique of Michel Foucault as it applies to the engagement of Western science and indigenous peoples in the context of biomedical research. The science of population genetics, specifically as pursued in the Human Genome Diversity Project, is the obvious example to illustrate the contraposition of modern science and ‘indigenous science’, the tendency to depreciate and marginalize indigenous knowledge systems, and the subsumption of indigenous moral preferences in the juridical (...) armature of international human rights law. I suggest that international bioethicists may learn from Foucault’s critique, specifically of the need for vigilance about the knowledge/power relation expressed by the contraposition of modern science and ‘indigeneity’. (shrink)

In the first half of the twentieth century the attention of American and European researchers was drawn to the area of ‘extreme physiology’, partly because of expeditions to the north and south poles, and to high altitude, but also by global conflicts which were fought for the first time with aircraft, and involved conflict in non-temperate zones, deserts, and at the freezing Eastern front. In an attempt to help white Euro-Americans survive in extreme environments, physiologists, anthropologists, and explorers studied (...) class='Hi'>indigenous people’s bodies, cultures, and technologies. This paper will sketch an outline of the science of white survival in three ‘extreme’ environments: the Antarctic and Arctic; high-altitude; and the Australian desert, with a particular focus on the ways in which indigenous populations were studied, or in some cases ignored, by Western biomedical scientists—despite their crucial and systematic contributions to the success of experiments and expeditions. Particularly focusing on altitude, and on blood in both its symbolic and literal sense, the article shows how assumptions about race, indigeneity, civilisation, and evolution shaped the ways White Westerners understood their own bodies as well as those of the people they encountered in cold, high and hot places on the earth. Despite new discoveries in physiology and evolutionary science, old racialised assumptions were maintained, especially those that figured the temperate body as civilised and the tropical body as primitive; and in at least one case it will be shown that these racialised assumptions significantly altered, if not retarded, the science of respiratory physiology. (shrink)

Utilizing social semiotic approaches, this article addresses how genetic researchers’ organizing narratives have involved extensive ontological and epistemological violence in their objectification Karitiana Indigenous people of Western Brazil. The paper analyses how genetic researchers have represented the Karitiana in the US and Canadian courts, post-9/11 forensic identification technology development, and patents. It also considers disputes over the sale of Karitiana cell lines by the US National Institutes of Health-funded Coriell Cell Repositories. These case studies reveal how the prominent population (...) geneticist Kenneth K. Kidd of Yale University and other genetics researchers have constituted the Karitiana as Extreme Other; liminal figures who define the boundaries of humanity. Originally sampled in 1987 by a Yale University epidemiologist, forensic genetic researchers have since utilized Karitiana cell lines to metonymically represent the Karitiana. The practices of objectification have imposed a genetically distinct special status upon the Karitiana that restricts recognition of their self-determination, rights and dignity, and which imposes onerous obligations to serve as research objects for the greater good of Humanity. The Karitiana are included as biological labour, but excluded from decision-making or asserting any other claims. Scientists have organized and maintained biotechnologically-mediated colonial relationships in which they and their institutions extract nearly all immediate and tangible benefits. The fusing of genetic research’s ontological and epistemological violence with the violence of state legal institutions raises important questions about the scope and practices of sovereignty, particularly in determining and enforcing states of exception through violence. (shrink)

Inequities in access to oncology care among Indigenous peoples in Canada are well documented. Access to oncology care is mediated by a range of factors; however, emerging evidence suggests that healthcare providers, including nurses, play a significant role in shaping healthcare access. The purpose of this study was to critically examine access to oncology care among Indigenous peoples in Canada from the perspective of oncology nurses. Guided by postcolonial theoretical perspectives, interpretive descriptive and critical discourse analysis (...) methodologies informed study design and data analysis. Oncology nurses were recruited from across Canada to complete an online survey (n = 78). Nurses identified a range of barriers experienced by Indigenous peoples when accessing oncology care, yet located these barriers primarily at the individual and systems levels. Nurses perceived themselves as mediators of access to oncology care; however, their efforts to facilitate access to care were constrained by the dominance of biomedicine within healthcare. Nurses' constructions of access to oncology care highlight the embedded narrative of individualism within nursing practice and the relative invisibility of racism as a determinant of equitable access to care among Indigenous peoples. This suggests a need for oncology nurses to better understand and incorporate structural determinants of health perspectives. (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)

ABSTRACT Epistemic social oppressions such as ‘epistemic partiality’, ‘epistemic injustice’, ‘epistemic harms and wrongs’, ‘epistemic oppression’, ‘epistemic exploitation’, ‘epistemic violence’, or ‘epistemicide’ are terms with increasing theoretical importance and empirical applications. However, less literature is devoted to social strategies to overcome such oppressions. Here the Sorelian and Gramscian concept of social myth is considered in that sense. The empirical case is the myth of ‘The last Indigenous peoples of Europe’ present in the Basque Country, divided between France and (...) Spain and with a historical national culture under their statist powers. The myth has a renewal in a recent social movement, the Biltzarre platform and its Basque Cultural Instinct Team, currently followed through a Participatory Action Research. The results show how such social myth gives coherence and empowers the Basque identity against the loss of identity caused by the French and Spanish powers. Finally, progress is being made on how epistemic oppressons can end, ironically, because of the success of an epistemicide. Presumably, social myths counteract epistemic oppression, strengthening the social identity and self-esteem of the subject, as a form of empowerment in social and political issues. (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 (...) 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 particularly 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. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of “rigorous scientific research,” one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples. (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 (...) 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)

Epidemiology for and by Indigenous peoples uses quantitative and statistical methods to better document Indigenous health concerns, and is oriented around providing data for use in advocacy to promote Indigenous health equity. This advocacy-oriented, technoscientific work bridges the often distinct social worlds of Indigenous communities, professional public health research, and public policy-making. Using examples from a multisited ethnographic study in three settings, this paper examines the forms of expertise that researcher/practitioners enact as they conduct research (...) that simultaneously harnesses epidemiology’s persuasive power in social worlds like public health and public policy, while also critically challenging legacies of colonialist erasures and misrepresentations of Indigenous health in population statistics. By demonstrating how these continual translations across multiple social worlds enact expertise, this analysis offers a new integration of discussions about both coloniality and expertise within science and technology studies. By focusing on the experiences of technoscientific professionals themselves, this study’s findings also pose new questions for broader STS conversations about how activism is shaping the production of knowledge about health in the twenty-first century. (shrink)

The political and legal perspectives on and understanding of the process of land reform in South Africa differ from the church's vision and understanding on what land reform entails. Currently, land reform through the restitution of church land to indigenous people is still not solved to all party's satisfaction, although this issue is on the table since 1994. The research focuses on the actions by the Roman Catholic Church that argued that 'society ensures justice when it provides the conditions (...) that allow associations or individuals to obtain what is their due, according to their nature'. The church also suggests that land is an arable resource that gives people access to certain basic needs necessary for them to lead a dignified life. This article discusses and evaluates the outcomes of the restitution of Catholic Church land since 1994-2014. It also addresses the contribution by the Catholic Church to land restitution during the period of 1994 -2014 to advocate and encourage further participation in the land reform programme. In light of this reality, one can ask whether the Catholic Church can bring about positive influence to the present challenges facing the land reform programme. Positive examples of the trainings and workshops conducted by the church within different communities are showcased to note possible future structures for dealing with land restitution from the church's perspective. (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 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)

Waters aries that the demands of indigenous bio-prospecting programs need to be considered against the needs of indigenous communities. Issues of sovereignty and rights to self-determination need to be resolved in the context of negotiating bio-prospecting plans. By setting out clear guidelines and priorities, as determined through the eyes and values of indigenous peoples, indigenous communities may have an opportunity to participate in the global sharing of biomedical information and healing for all our relations. Before (...) any projects get underway, however, social, political, and legal issues ought to be settled so that informed decision can be made on the part of indigenous communities to partake of the invitation to bio-prospecting, or not. (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)

BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles (...) found 1391 were excluded ; 56 were relevant and included. Articles were categorised into original research that evaluated the consent process or publications detailing the process of seeking consent and guidelines for ethical research. Guidelines were categorised into international ; national and state/regional/local guidelines. In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process. (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)

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)

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)

A decision-tree model of an indigenous forest management system centered around shamu (Cunninghamia lanceolata),an important timber species in China, was constructed from extensive interviews with peasants in two villages in Fujian Province, China. From this model additional interviews were conducted to elicit from these peasants their reasons for selecting among decision alternatives. Those reasons that were of an ecological nature were discussed in detail with the peasants to elicit indigenous interpretations of ecological processes in order to test an (...) hypothesis that a strong analogy exists between traditional indigenous and scientific knowledge of ecological processes.Three cases are presented that test this hypothesis. These three cases concern the effect of intercrops on the growth of shamu,the relative merits of seedlings and root collar sprout cuttings for forest regeneration, and the effects of repeated plantings of shamuon soil chemistry. All three cases provide strong support for the research hypothesis and suggest that, even in the absence of a formalized scientific method, humans exercise mental processes typical of scientific thinking. This phenomenon is called proto-science. (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 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)

There has been extensive work in the space of Indigenous epistemological approaches to research. Because Australian Indigenous peoples have been researched significantly, there are guidelines around the ethical and cultural conduct of this type of research. Via investigating the Academy’s approach to research in general, we can illuminate the vast differences between empirical approaches to research from the ‘West’ compared to knowledge acquisition and sharing through ‘relationality’ from an Indigenous perspective. This paper investigates this dichotomy and (...) brings into question the premise of power and value attributed to each approach, arguing that this is still not an equal ascription. This paper posits a reconfiguration of approaches to research as a way of extending on research in general, and provides a platform of how Indigenous knowledges can extend on and reconfigure, in a positive way, approaches to research. (shrink)

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. To allow the potential benefits of genomics (...) to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects. (shrink)

In public health research, tracking folk racial categories (in disease risk, etc.) is a double-edged tool. On the one hand, tracking folk racial categories is dangerous because it reinforces a problematic but fairly common belief in biological race essentialism. On the other hand, ignoring racial categories also runs the risk of ignoring very real biological phenomena in which marginalized communities, likely in virtue of their marginalization, are sicker and in need of improved resources. Much of the conversation among epidemiologists and (...) philosophers of medicine concerning the issue of tracking folk racial categories in public health research springs forth from largely black/white binarized health inequities. While health inequities between black and white Americans are certainly a very important topic, I am interested in investigating the complications to this conversation about the potential harms of tracking folk racial categories in public health research generated by the consideration of Indigenous identities in the US—groups whose health inequities are typically tracked based on the folk racial category of “Native American” or “American Indian,” but whose unique identity categories and community membership problematize the current spectrum of approaches to tracking folk racial categories in epidemiologic research. This paper will draw on scholarship by and about Indigenous people in the US context to address an undertheorized facet of the conversations concerning the potential harms of tracking folk racial categories in public health research, including the potential undermining of American Indian sovereignty and Indigenous epistemologies. I will end on some methodological considerations inspired by the inclusion of Indigenous identities in the US in the conversation about tracking folk racial categories in epidemiologic research. (shrink)

The Western world is experiencing a resurgence of interest in the therapeutic potential of psychedelics, most of which are derived from plants or fungi with a history of Indigenous ceremonial use. Recent research has revealed that psychedelic compounds have the potential to address treatment‐resistant depression and anxiety, as well as post‐traumatic stress disorder and addictions. These findings have contributed to the decriminalization of psychedelics in some jurisdictions and their legalization in others. Despite psychedelics’ opaque legal status, numerous companies and (...) individuals are profiting from speculative investments with few, if any, benefits accruing to Indigenous Peoples. In this paper, we suggest that the aptly named “psychedelic renaissance,” like the European Renaissance, is made possible by colonial extractivism. We further suggest that Indigenous philosophical traditions offer alternative approaches to reorient the “psychedelic renaissance” towards a more equitable future for Indigenous Peoples, psychedelic medicines, and all our relations. (shrink)

Conducting phenomenological research for dissertations can be an involved and challenging process, and writing it up is often the most challenging part. How to Write a Phenomenological Dissertation gives students practical, applied advice on how to structure and develop each chapter of the dissertation specifically for phenomenological research. Phenomenology is about personal experience and personal experience varies from researcher to researcher. However, this variation is a big source of confusion for new researchers in the social, behavioral, or health sciences. This (...) brief text is written in a simple, step-by-step fashion to account for this flexibility and variation while also providing structure necessary for a successful dissertation. Broken up into chapters that follow each chapter of the dissertation, this text logically addresses the various parts of phenomenological research, starting with ensuring phenomenology is the right method for your research, writing the literature review, going through methods and results sections to analysis and discussion. The author, using experience gleaned from supervising phenomenological dissertations for many years, gives time-tested advice on how structure the dissertation to fit into more common frameworks, using checklists and tables throughout. Each chapter includes a list of helpful resources for students to use alongside this book with specific information on methods and research. Unique to this text is a chapter on creating your own phenomenological method which allows students to expand their viewpoints and experiment in future studies after the dissertation. (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)

People who identify as members of religious communities, such as the Amish and Low German Mennonites, face challenges obtaining quality health care and engagement in research due in part to stereotypes that are conveyed through media and popular discourses. There is also a growing concern that even when these groups are engaged in research, the guiding frameworks of the research fail to consider the sociocultural or historical relations of power, further skewing power imbalances inherent in the research relationship. This paper (...) aims at discussing the uses of cultural safety in the context of health research and knowledge translation with groups of people that are associated with a specific religion. Research with the Amish and Low German Mennonites is provided as examples to illustrate the use of cultural safety in this context. From these examples, we discuss how the use of cultural safety, grounded in critical theoretical perspectives, offers new insight into health research with populations that are traditionally labeled as minority, vulnerable, or marginalized, especially when a dominant characteristic is a unique religious perspective. (shrink)

Indigenous people (IP) have faced multiple difficulties in education. Indigenous students often do worse academically than non-indigenous student peers. These stated the low enrollment rates showed a dropout rate, absenteeism, repetition rates, literacy rate, and thus the educational outcomes, with retention and completion being two significant issues. Further, this study explores the lived experiences and challenges faced by indigenous high school students amidst the new normal education. Employing the Interpretative Phenomenological Analysis, the findings of this study (...) were: (1) The reason why IP learners were not satisfied with their performance is that they cannot understand some of the lessons due to the language barrier. (2) IP learners are committed to finishing their studies, however, some of the students lack resources for studying, like gadgets for researching, and they do not have cell phones. And the other students may have gadgets or cellphones, but their internet connection is low or not accessible in some places at their location. (shrink)

Although awareness of cultural differences that distinguish Indigenous peoples has increased worldwide following attention from international human rights bodies, Indigenous cultural values have had little influence in shaping research agendas or methods of inquiry. Self‐determination and reconciliation policies have been part of the decolonisation agenda of governments for several decades; however, these have not, until recently, been considered of relevance to research. Indigenous peoples feel that they are the most studied population in Australia, to the (...) point where even the word research arouses feelings of suspicion and defensive attitudes. Indigenous people are generally cynical about the benefits of research and cautious toward what many perceive to be the colonial mentality or ‘positional superiority’ ingrained in the psyche of western researchers. This article examines the characteristics and colonising effects of traditional research methods and describes an alternative, decolonising approach. Decolonising research methodology is congruent with Indigenous epistemology and is guided by the values and research agenda of Indigenous people. TheGuidelines for ethical conduct in Aboriginal and Torres Strait islander health research, developed by the National Aboriginal and Islander Health Organisation (NAIHO) with the National Health & Medical Research Council (NHMRC) in 2003 are examined, as they exemplify a decolonising paradigm for researchers. (shrink)

The Value of Trees project, funded bythe International Development Research Council ofCanada (IDRC), supported the joint efforts of theUniversity of Alberta and the University of Zimbabweto investigate the economic costs and benefitsassociated with trees and forests in the small holderfarming sector in Zimbabwe. The Value of Trees project provided funding for graduate students andfaculty from the two participating universities tocarry out studies in the disciplines of forestry,agricultural economics, and sociology in order toprovide policy recommendations regarding the role ofwoodlands in sustainable (...) small holder farming in acontext where agricultural production appears to putincreasing stress on woodlands. The numerous projectsincluded such topics as the following: the use offuelwood under conditions of scarcity, tree tenure andlocal institutions in woodland use and sustainability,gender and wealth as related to tree planting andconservation, time preferences in natural resourceconsumption, ownership and economic impact ofeucalyptus woodlots, cultural and economic valuesassociated with woodlands, and uses and conflictsrelating to woodlands across different land categoriessuch as resettlement land and state forests. Manyother studies were not funded by, but were associatedwith Value of Trees. The findings fall withintwo broad categories. The first set includes thosedirectly related to generating values for differentaspects of the woodlands, particularly from theperspectives of rural households. The main finding isthat despite being highly valued by local people forboth economic and social reasons, woodlands are rankedlower in importance by local farmers than agriculturalland. The second set of findings relates to thecomplexities of the social system of the woodlands.Local institutions, history, resource conflicts, andtenure issues emerge as key to understanding the waythat people interact with the woodlands. Finally,local people have valuable knowledge and strategies tooffer in the design of sustainable management. Thepolicy implications of these findings for Zimbabwe arethat economic incentives could be important in asustainable woodlands strategy, but that anysuccessful program must incorporate an understandingof the profoundly complex and at times contradictoryhuman dynamics of woodland use and values. (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)

Canadian Schools of Nursing rest upon white, colonial legacies that have shaped and defined what is valued as nursing knowledge and pedagogy. The diversity that exists in clinical nursing and is emerging within the graduate student population is not currently reflected within nursing faculty and academic leadership. Black, Indigenous, and People of Color (BIPOC) nurse leaders, historically and presently, are repeatedly left unacknowledged as knowers and keepers of nursing knowledge. This lack of diversity persists across nursing knowledge generation, research, (...) and healthcare practices that ultimately aim to serve the increasingly diverse Canadian population. This narrative inquiry study examined the experiences of eight BIPOC graduate nursing students as they navigated white academic nursing spaces. The findings are presented to reflect their experiences of entrenched in whiteness, erasure of identity, and navigating belonging. These study findings highlight the importance of surfacing academic nursing history shaped by colonialism and racism, the need to diversify nursing faculty and the graduate nursing student population, and implementing nursing curricular and syllabi audits to ensure that they reflect the multitude of ways of knowing to expand dominant Eurocentric and Western knowledge in nursing education. (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)

PurposeThe purpose of this paper is to look at some of the issues surrounding access to and the use of new media technologies by Indigenous people in Australia and question why this is an area of study that receives a marginal focus in academic work.Design/methodology/approachDrawing on previous literature in the area of information and communications technology (ICT) adoption and social exclusion, this paper combines the methodological frameworks adopted by hegemony research and more general studies of new media.FindingsThe paper discusses (...) the impacts of new media use by Indigenous communities, within the framework of discussions about a “global Digital Age”. The paper also briefly looks at the social implications of new media adoption.Originality/valueIt questions the assumption that adoption and use of new media is for the “good” or “benefit” of all. It will be of value to researchers of ICT adoption by Indigenous communities. (shrink)

Increasingly, it is accepted wisdom for agricultural scientists to get feedback from indigenous peoples—peasants—about new improved seeds and biotechnologies before their official release from the experiment station. What is not yet accepted wisdom is the importance of cognitive science to research on farmer decision making, especially of the type “Why don't they adopt.” In this paper, the impact of the cognitive revolution on models of farmer decision making is described, and decision making models before and after the cognitive (...) revolution are contrasted. An example of a decision model after the cognitive revolution is given by the Malawi farmer's decision whether to use chemical fertilizers or organic fertilizers or both. Results of testing the model show that in Malawi, smallholders' lack of capital and credit are more important factors constraining use of chemical fertilizers than are indigenous beliefs in organic fertilizers or fears of a future dependency on chemicals. (shrink)

Indigenous understandings of consciousness represent an important inspiration for scientific discussions about the nature of consciousness. Despite the fact that Indigenous concepts are not outputs of a research driven by rigorous, scientific methods, they are of high significance, because they have been formed by hundreds of years of specific routes of cultural evolution. The evolution of Indigenous cultures proceeded in their native habitat. The meanings that emerged in this process represent adaptive solutions that were optimal in the (...) given environmental and social milieu. We argue that it would not be appropriate to handle these meanings as something that science considers to be wrong, or outdated relics of the human past. In contrast, Indigenous concepts and their meanings may be considered to be an important heritage of native human populations, but moreover, they are also an interesting material for analyses and inspiration for recent scientific debates. Furthermore, it is also necessary to mention another reason why the exploration of Indigenous concepts has been so topical recently. Thus far, much psychological theoretical development has been published in English as a result of research conducted in Western countries. The dominance of English and the superiority of research conducted by researchers from Western countries may be considered as a kind of barrier toward other ways of knowing. We argue that the traditional cultural knowledge coming from Indigenous societies may offer an interesting source of new thought for science. The weakening of the strong dependence of science on well-established academic circles dominated by Western theoretical perspectives may be beneficial for stimulating its further development (Sidik, 2022). Therefore, this special symposium of the Journal of Consciousness Studies aims to open the doors for other ways of knowing, For the knowing that emerged in native Indigenous cultures. We argue that the rich cultural heritage of these societies may stimulate the emergence of new analytical perspectives for scientific theorising about the nature of consciousness. For all these reasons, the Indigenous concepts of consciousness captured our interest, and we decided to start investigating them. In 2020 and 2021, we retrieved and analysed pieces of information from past ethnographical field evidence gathered in various Indigenous cultures. After removal of data about the cultures showing a high acceptance of influences from external religious traditions (e.g. Christianity, Islam or Buddhism), a comparative analysis of data from 55 Indigenous groups was conducted and published in the Journal of Consciousness Studies (Trnka and Lorencova, 2022). This primary project revealed many interesting results, but more importantly, it also showed many unexplored avenues that called for further exploration. This special symposium of the Journal of Consciousness Studies is a continuation and new development of research on the Indigenous understanding of consciousness. Past ethnographical evidence involved some valuable pieces of knowledge about Indigenous concepts of consciousness, but the relevant information was often fragmentary or even totally missing in some cases. Moreover, many authors of past ethnographic records applied a strong etic approach that clouded the understanding of native Indigenous thoughts. Therefore, the main goal of the recent symposium was to broaden the overall information basis for the analysis of Indigenous concepts of consciousness or closely related phenomena. In other words, the symposium aimed to bring more detailed knowledge of Indigenous concepts of consciousness, mind and body and their relations in various groups of Indigenous people. In 2022, we contacted potential contributors and were pleased by their positive reactions, which reflected the topicality of this research focus. The authors were asked to draft their papers with a special focus on (a) a cultural Indigenous understanding of the concept of consciousness, (b) a cultural Indigenous understanding of the mind-body differentiation (or consciousness-body differentiation) and (c) cultural metaphors and cultural beliefs related to consciousness, mind and body. Many of contributors were native members of Indigenous cultures that made the descriptions of Indigenous concepts more accurate and reliable. This enabled many truly emic, in-depth insights into the Indigenous concepts of consciousness and related phenomena to be gained. As a result, this issue of the Journal of Consciousness Studies introduces eight papers, each focused on a different geographical region/Indigenous groups: Nahua and Maya (Mexico), Guna (Panama), Mapuche (Chile), Maori (New Zealand), Telingit (Altai), Mongolian groups, Igbo (Nigeria) and Asabano (New Guinea). These papers are followed by one more general paper discussing magical consciousness on the case of an Aboriginal wise man (Australia). The symposium closes with our concluding editorial essay, which generalises the findings and introduces three theoretical models of understandings of consciousness inspired by the analysis of Indigenous concepts of consciousness. Aside from the importance for basic research, the exploration of Indigenous concepts of consciousness is also very important for informing practitioners from many applied spheres. Many current methods for treating addictions, traumatic life events, professional burnout and other mental health problems use features of Indigenous healing practices. A proper understanding of meanings related to mind, body and consciousness are quite important for Western psychotherapists to adapt the Indigenous practices to particular Western cultural milieus. Furthermore, a proper understanding of meanings related to mind, body, and consciousness is also important for treating ethnic, linguistic and culturally diverse populations (APA, 1990). For therapists, psychologists and physicians, understanding the meanings of these concepts may promote their own better care of their clients from various Indigenous ethnic groups. Last but not least, Indigenous concepts, meanings and languages are closely related to the continuation of the heritage of Indigenous people (United Nations, 2016). The world’s Indigenous languages have recently been under threat of disappearing; many Indigenous languages are endangered globally, and the rate of loss is high (United Nations, 2016). Importantly, recent research has also shown that the retention of Indigenous languages may be protective for the psychological and physical health of their speakers. All these areas represent fields for potential use of the findings presented in this symposium of the Journal of Consciousness Studies. As a concluding note, the editors of this symposium hope that this collection of papers will inspire academic scholars while also providing important information for practitioners from various spheres. (shrink)