Researchers seeking to engage in projects related to Tribal communities and their citizens, lands, and non-human relatives are responsible for understanding and abiding by each Tribal nation’s research laws and review processes. Few studies, however, have described the many diverse forms of Tribal research review systems across the United States (US). This study provides one of the most comprehensive examinations of research review processes administered by Tribal Research Review Boards (TRRBs) in the US. Through a systematic (...) analysis, we consider TRRBs’ online presence, online documentation, and themes across documents, for five entity types: Tribal nations and Tribal consortiums, Tribal colleges and universities, Tribal health organizations, Indian Health Services, and other Tribal organizations. Results include an assessment of online presence for 98 potential TRRBs, identification of 118 publicly available online documents, and analysis of 41 themes across four document types: Tribal research codes and TRRBs’ guidelines, applications, and post-approval documents. Altogether, this research provides a macro-level analysis of the most common types of TRRBs in the US in an effort to increase researchers’ understanding of these important processes as they prepare to ethically engage Tribal communities in research. These results aim to empower Tribal decision makers as they align their TRRBs’ online visibility and documentation with community priorities and strengthen their protections for the rights and wellbeing of their citizens and community. Ultimately, by expanding our knowledge of TRRBs across the US, this contribution seeks to uphold Tribal sovereignty in research and promote ethical approaches to research with Indigenous communities. (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)

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)

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)

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)

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)

Faculty members in science, technology, engineering, and mathematics disciplines are typically expected to pursue grant funding and publish to support their research or teaching agendas. Providing effective professional development programs on grant preparation and management and on research publications is crucial. This study shares the design and implementation of such a program for Native STEM faculty from two tribal colleges and one public, non-tribal, Ph.D. granting institution during a 3-year period. The overall development and implementation of the program (...) is centered on the six R’s Indigenous framework – Respect, Relationship, Representation, Relevance, Responsibility, and Reciprocity. The role of NAF-STEM and their interactions with the program, as members of the community formed by their participation, impacted the program. Their practices and the program co-emerged over time, each providing structure and meaning for the other. Through such reciprocity, NAF-STEM and the program research team continually refined the program through their mutual engagement. They took on the shared responsibility of the program while they participated in and shaped its practices. The process and results of formative and summative assessment and the impact of COVID-19 on the program are reported. Results of the program offer lessons on the implementation of six R’s framework in professional development at institutions of higher education. (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)

This article is autoethnographic, based upon the authors’ experiences and reflections upon encountered moments of ethical tension whilst conducting research in rural Malawi. Given that knowledge production, as a process, has been marred by colonial forms of power, the project was underpinned by efforts to achieve a decolonial approach to the research, including the research ethics. The authors share of their endeavours to counterbalance the challenges of power asymmetries whilst researching and working with an Indigenous community (...) whose reality can be marginalised by the Western canon. The authors attempted to ensure that the values and customs of the researched community were respected and central to the research approach. When researchers are guided by local culture and customs, the participants are able to drive the research approach, incorporate their voice and share knowledge that is true to their context and reality. In this way, the research study is illustrative of how an ethics of care can help to facilitate decolonial research practice. (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)

Understanding human behaviour, thoughts, and emotional expressions can be challenging in the global context. Due to cultural differences, the study of psychology cannot be de-contextualised. This calls for unearthing of the explanatory systems that exist in Africa to understand and account for behaviour, emotions, and cognition of Africans. This call is addressed through the emergence of African Psychology (AP) or Indigenous Psychology in Africa (IPA) as a legitimate science of human experience. This Element discusses the motivations for AP, centrality (...) of culture, demarcations of AP, and the different strands within AP. It highlights issues related to African philosophy, African cultural anthropology, African philosophy of science, and suitable methodological approaches for AP research. It also discusses some selected theoretical contributions and applications of AP. The Element concludes that AP researchers and practitioners need to pursue interdisciplinarity and avoid meaningless rejection of good ideas from other cultural settings. (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)

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)

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)

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)

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as ‘Long COVID-19’. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a (...) multidisciplinary approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research. (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)

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

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)

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)

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

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

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

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

We seek to bring Black bodies and lives into full view within the enterprise of Indigenous health research to interrogate the unquestioned good that is taken to characterize contemporary Indigenous health research. We articulate a Black bioethics that is not premised upon a false logic of beneficence, rather we think through a Black bioethics premised upon an unconditional love for the Black body. We achieve this by examining the accounts of two Black mothers, fictional and factual (...) rendering visible the racial violence Black bodies have been subjected to. We call for a Black bioethics that reimagines the Black body as beautiful and belonging—to both someone and somewhere. (shrink)

Ethics, Policy & Environment, Volume 15, Issue 2, Page 172-187, June 2012.

Indigenous cultures of North America confronted a problem of knowledge different from that of canonical European philosophy. The European problem is to identify and overcome obstacles to the perfection of knowledge as science, while the Indigenous problem is to conserve a legacy of practice fused with a territory. Complicating the difference is that one of these traditions violently colonized the other, and with colonization the Indigenous problem changes. The old problem of inter-generational stability cannot be separated from (...) the post-colonial problem of sovereignty in the land where the knowledge makes sense. I differentiate the question of the value of knowledge (Part 1), and its content (Part 2). The qualities these epistemologies favor define what I callceremonial knowledge, that is, knowledge that sustains a ceremonial community. The question of content considers the interdisciplinary research of Indigenous and Traditional Ecological Knowledge, as well as the issue of epistemic decolonization. (shrink)

Indigenous cultures of North America confronted a problem of knowledge different from that of canonical European philosophy. The European problem is to identify and overcome obstacles to the perfection of knowledge as science, while the Indigenous problem is to conserve a legacy of practice fused with a territory. Complicating the difference is that one of these traditions violently colonized the other, and with colonization the Indigenous problem changes. The old problem of inter-generational stability cannot be separated from (...) the post-colonial problem of sovereignty in the land where the knowledge makes sense. I differentiate the question of the value of knowledge (Part One), and its content (Part Two). The qualities these epistemologies favor define what I call ceremonial knowledge, that is, knowledge that sustains a ceremonial community. The question of content considers the interdisciplinary research of Indigenous and Traditional Ecological Knowledge, as well as the issue of epistemic decolonization. (shrink)

The aim of this article is to discuss the relation between indigenous and scientific kinds on the basis of contemporary ethnobiological research. I argue that ethnobiological accounts of taxonomic convergence-divergence patters challenge common philosophical models of the relation between folk concepts and natural kinds. Furthermore, I outline a positive model of taxonomic convergence-divergence patterns that is based on Slater's [2014] notion of “stable property clusters” and Franklin-Hall's [2014] discussion of natural kinds as “categorical bottlenecks.” Finally, I argue that (...) this model is not only helpful for understanding the relation between indigenous and scientific kinds but also makes substantial contributions to contemporary debates about natural kinds.to contemporary debates about natural kinds. (shrink)

A history of colonization inflicts psychological, physical, and structural disadvantages that endure across generations. For an increasing number of Indigenous Australians, environmental epigenetics offers an important explanatory framework that links the social past with the biological present, providing a culturally relevant way of understanding the various intergenerational effects of historical trauma. In this paper, we critically examine the strategic uptake of environmental epigenetics by Indigenous researchers and policy advocates. We focus on the relationship between epigenetic processes and (...) class='Hi'>Indigenous views of Country and health—views that locate health not in individual bodies but within relational contexts of Indigenous ontologies that embody interconnected environments of kin/animals/matter/bodies across time and space. This drawing together of Indigenous experience and epigenetic knowledge has strengthened calls for action including state-supported calls for financial reparations. We examine the consequences of this reimagining of disease responsibility in the context of “strategic biological essentialism,” a distinct form of biopolitics that, in this case, incorporates environmental determinism. We conclude that the shaping of the right to protection from biosocial injury is potentially empowering but also has the capacity to conceal forms of governance through claimants’ identification as “damaged,” thus furthering State justification of biopolitical intervention in Indigenous lives. (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)

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)

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)

Different cultures show different understandings of consciousness, soul, and spirit. Native indigenous traditions have recently seen a resurgence of interest and are being used in psychotherapy, mental health counselling, and psychiatry. The main aim of this review is to explore and summarize the native indigenous concepts of consciousness, soul, and spirit. Following a systematic review search, the peer-reviewed literature presenting research from 55 different cultural groups across regions of the world was retrieved. Information relating to native concepts (...) of consciousness, soul, and spirit were excerpted from the sources and contrasted. Contrasting these indigenous concepts revealed important implications for understanding consciousness within a cross-cultural perspective and has practical implications for applied approaches utilizing native indigenous traditions. (shrink)