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)

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)

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 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)

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)

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

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

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)

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

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 ethics guidelines grew out of several infamous episodes where research subjects were exploited. There is significant international synchronization of guidelines. However, indigenous groups in New Zealand, Canada and Australia have criticized these guidelines as being inadequate for research involving indigenous people and have developed guidelines from their own cultural perspectives. Whilst traditional research ethics guidelines place a lot of emphasis on informed consent, these indigenous guidelines put much greater emphasis on (...) interdependence and trust. This article argues that traditional guidelines are premised on relationships of equal power, and that often the researcher has more power that is not fully equalized by providing information. Where there is a relationship of unequal power, then focusing on interdependence and trust is more likely to achieve ethical safety. We illustrate this thesis by describing the detail of a research project looking at the use of interpreters, where we video-recorded live consultations and then interviewed the patient, interpreter and doctor. We conclude by suggesting that mainstream research ethics guidelines should pay more attention to the development of a trustworthy relationship between subject and researcher, and that, following the lead from clinical medicine, we should develop a culturally competent ethical framework for research on human subjects. (shrink)

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

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

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)

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

The research aims to determine cross-cultural virtue ethics. A virtuous culture is most significantly an emotion-related thing consisting of trust, community, and meaning. It is that platform where all the interrelationships can form new advancements and implementations with the caliber of maximizing principles for all collaborators within a community. The research study also analyses moral philosophies across global indigenous societies. Certain suggestions presented by virtue ethics involve the treatment of teachers just like they are lifelong (...) projects. Teachers are those personalities that can change and inspire us from the situation where we are. The research was based on secondary data for determining the research using E-views software and generating results that included descriptive, unit root, variance, and co-integration analysis between them. The objective of this term is not to formulate and build those ethically perfect virtues and consider them perfect without any thought. Instead, do those virtues that can provide such a screen that can make us see the world without any ambiguity and judge things in the most improved way. Overall, the result found that moral philosophies show a direct and significant link with global indigenous societies. Virtue ethics is a term that provides the best understanding of virtuous human beings. This proves to be a good guide for us so that we can live our lives without any specified rules and provide solutions to all those problems based on ethics. (shrink)

This case study details how and why integrating storytelling, empathy, and inclusive practice shifted QSuper, a large Australian finance organisation, from minimal awareness to moral awareness then moral capability in the delivery of services to Indigenous customers. During the Royal Commission into Misconduct in the Banking, Superannuation, and Financial Services Industry, QSuper were recognised for their exemplary service with Indigenous customers (Hayne, Interim report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth (...) of Australia, 2018; _Transcript of Proceedings, 13 August_, Commonwealth of Australia, 2018). This position was in stark contrast to the inaccessible service offerings of other financial organisations where some used predatory practices to sell unethical financial products to Indigenous Australians (Hayne, Interim report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2018; Hayne, Final report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2019a). Storytelling garned from visiting customers in remote communities and other meaningful activities involving inclusive practice to facilitate ethical decision-making in finance is different to standard functionalist finance approaches (Schinckus, Int Rev Financ Anal 40:103–106, 2015). Two empathetic questions asked within QSuper complementing the storytelling, were: “What is the right thing to do by the customer?” and “How would I feel if this were my mother?” Exploration into the lived reality of moral capacity is important based on the Commission finding many of the 490,000 finance staff do not know how to provide ethical services to vulnerable customers, in particular remote Indigenous customers (Australian Bureau of Statistics. Labour force, Australia, detailed. ABS. Retrieved from https://www.abs.gov.au/statistics/labour/employment-and-unemployment/labour-force-australia-detailed /latest-release, 2021; Hayne, Final report: Royal commission into misconduct in the banking, superannuation and financial services industry, Volume 1. Commonwealth of Australia, 2019a). Furthermore, there is minimal literature on the role of Indigenous storytelling to heighten moral awareness in the finance industry which was found to lead to better ethical outcomes. (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)

Researchers, when engaging with Māori communities, are in a process of relationship building and this process can be guided by the principles of the Treaty of Waitangi, partnership, participation and protection. The main concerns for many indigenous peoples in research revolve around respect for their indigenous rights, control over research processes and reciprocity within research relationships to ensure that equitable benefits are realised within indigenous groups. Māori have identified similar issues and these concerns can (...) be aligned with the principles of the Treaty of Waitangi. The relevance of the Treaty of Waitangi to research ethics is discussed and this paper suggests a revised interpretation of the treaty principles to incorporate the range of ethical issues that Māori have expressed as important. (shrink)

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

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)

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)

Mining companies in Australia are increasingly required to interact with Indigenous groups as stakeholders following Native Title legislation in the early 1990s. A study of five mining companies in Australia reveals that they now undertake a range of programs involving Indigenous communities, to assist with access to land, and to enhance their public profile. However, most of these initiatives emanate from carefully quarantined sections of mining companies. Drawing upon cross-cultural and diversity research in particular, this paper contends (...) that only initiatives that strive towards power sharing with Indigenous groups and strategies for broadening the organizational interface with Indigenous groups, will contribute to more ethical practices in mining and other companies. (shrink)

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

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)

Within this submission the authors share their experiences as a blended research team with Aboriginal community and mainstream academic researchers. The team has collaborated since 2004 on several externally funded research projects. Initially, the team engaged in research through mainstream methodologies. In the process, the community co-researchers and participants were silenced through mainstream cultural practices that were unfamiliar and meaningless in Wikwemikong culture. More recently, the team has employed a community conceived de-colonizing methodology, developed from within Wikwemikong (...) Unceded Indian Reserve. Within this submission, the authors will highlight their initial cultural missteps, followed by more recently utilized culturally relevant approaches. It is proposed that what might be ethically sound research with mainstream participants and among mainstream researchers can silence and subvert practices among those from marginalized groups/cultures. Provisional suggestions are offered for researchers interested in co-researching in Aboriginal communities. (shrink)

In spite of many and varied concerns that the processes of institutional ethical review are flawed, cumbersome, and in need of reform, these processes do provide effective protection in certain sit...

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)

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

The growing demand for research that is culturally sensitive and contextually relevant is leading to a greater acceptance of indigenous paradigms. Despite this, African philosophy, with its rich cultural and ethical dimensions, is still developing as a field. This paper delves into the philosophical concepts of Ubuntu, Ukama and Consciencism, exploring the ontology, epistemology, axiology and methodology of indigenous African philosophy. It highlights the importance of relationships, community, interconnectedness and a holistic understanding of human existence and experiences. (...) Indigenous African philosophy presents itself as an alternative framework for addressing health and social issues through co‐creation, active participation and empowerment. Ontologically, it focuses on relativism and individuals defined by their social and relational contexts. Epistemologically, it values the social construction of knowledge, which should be shared for the benefit of others. Relational ethics are central to African axiology. Together, the ontological, epistemological and axiological basis of African philosophy form a unique paradigm that emphasize community and examine phenomena in both physical and spiritual contexts to achieve a comprehensive understanding. (shrink)

Around the world, a growing number of communities are voicing their demands for authority in the governance of research involving them. Many such communities have experienced histories of exploitative, stigmatizing, intrusive research that failed to benefit them. To better understand what strategies communities are developing in order to have a say in research oversight, we conducted a scoping review of the international peer-reviewed and grey literature. Three primary strategies were identified: (1) guidelines; (2) community review boards; and (...) (3) community advisory boards. Guidelines include documents developed by, with, or for communities to outline ethical behavior or conduct in research with or within the community. Community review boards offer ethical review of research protocols, much like traditional research ethics boards, but are community led and focus on community interests. Community advisory boards consist of representatives from a given community and are developed to advise institutions or research teams on community-level ethical matters pertaining to research projects. Initiatives led by Indigenous communities far outnumbered others in the sample, reflecting the legacy of continuous Indigenous resistance to research as a tool of colonialism. In several cases, communities in marginalized neighbourhoods, where harmful and exploitative research practices have taken place, emphasized the significance of community-led governance grounded in shared geographical and social contexts. We discuss some of the beneficial and challenging features of each type of strategy and offer recommendations for stakeholders who wish to support community-led efforts in research ethics. (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)

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)

Bio‐banking in research elicits numerous ethical issues related to informed consent, privacy and identifiability of samples, return of results, incidental findings, international data exchange, ownership of samples, and benefit sharing etc. In low and middle income (LMICs) countries the challenge of inadequate guidelines and regulations on the proper conduct of research compounds the ethical issues. In addition, failure to pay attention to underlying indigenous worldviews that ought to inform issues, practices and policies in Africa may exacerbate the (...) situation. In this paper we discuss how the African context presents unique and outstanding cultural thought systems regarding the human body and biological materials that can be put into perspective in bio‐bank research. We give the example of African ontology of nature presented by John Samwel Mbiti as foundational in adding value to the discourse about enhancing relevance of bio‐bank research in the African context. We underline that cultural rites of passage performed on the human body in majority of communities in Africa elicit quintessential perspective on beliefs about handling of human body and human biological tissues. We conclude that acknowledgement and inclusion of African indigenous worldviews regarding the human body is essential in influencing best practices in biobank research in Africa. (shrink)

Background: Persistent healthcare emphasis on universal moral philosophy has not advantaged indigenous and marginalised groups. Centralising cultural components of care is vital to provide ethical healthcare services to indigenous people and cultural minorities internationally. Woods’ theoretical explication of how nurses can integrate cultural safety into a socioethical approach signposts ethical practice that reflects culturally congruent relational care and systemic critique. Aim: To demonstrate the empirical utility of Woods’ ethical elements of cultural safety within a socioethical model, through analysis (...) of indigenous nurses’ practice realities in Aotearoa New Zealand. Research design: The study used a qualitative indigenous narrative inquiry. Participants and research context: Participants were recruited nationally. Twelve Māori registered nurses and nurse practitioners were interviewed. All participants provided direct care in either primary or secondary health services. Ethical considerations: Research approval was gained from the Human Ethics Committee of the lead author’s tertiary institution. Participation was voluntary, and written informed consent was obtained. Findings: Analysis highlighted the following: (1) cultural needs, which for Māori were integral to care, were easily subsumed by clinical care being prioritised; (2) ethical care by non-indigenous nurses requires critical reflection about broader equity issues that impact Māori disengagement from healthcare; (3) retention of indigenous nurses was seen as essential because their advocacy and the cultural ‘fit’ for Māori contributed to positive healthcare outcomes; and (4) committed leadership ensured culturally safe care was not eroded through workplace efficiencies. Discussion: The data provide rich representation of Woods’ model. The data indicate that nurses must engage reflexively with a relational ethic of care and social justice dimensions in order to deliver culturally safe care. Conclusion: Woods’ model provides a critical lens for nurses to examine their relational practice and systemic factors that enhance or detract from culturally safe care when caring for members of any indigenous group. (shrink)

Despite theorisation and consistent Pracademic (academics who are also practitioners) contributions to the concepts of truth-telling and decolonising epistemologies in the fields of activist research, there remains ongoing need for articulating the everyday praxis and positionality of empirical work. This paper considers the practice of two intercultural Australian-based practitioners’ examination of the ethical practices towards decolonising praxis as a contributor to third-space youth development which considers the space between participants. First Nations terminology is drawn on to explore the empirical (...) nature of third space theory (Bhabha) acknowledging the social construct of hybrid identities within individuals and communities’ personhood. Through exploring Indigenous inquiry as a contributor to third-space youth development, this paper argues that co-creation of knowledge amongst young people and practitioners considers a third space which can allow for deeper understandings of intercultural work and power dynamics. This article provides the opportunity to further explore a critical analysis of the challenges and possibilities of practitioners/pracademics working towards a decolonising journey which has implications for the ethics of youth work practice globally. (shrink)

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

Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the (...) question of how to handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted. (shrink)

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

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)

This research advocates a strategy to mitigate or prevent further anthropogenic climate change and preserve natural resources. The strategy takes into account mechanisms of social and moral norms, which are innate in humanity due to millions of years of evolution. Social norms themselves are not innate, but the mechanisms to acquire them and implement them are. To slow down anthropogenic climate change global forces, inclusive of governments, NGOs, and collective humanity, should help indigenous peoples to protect their territories (...) and property. Important to the moral argument is highlighting the murder of Berta Cáceres, a Honduran environmental activist, in 2015 by military members of Honduras at the instruction of the Honduran joint chiefs of staff as well as the likely involvement of an energy company. To conclude, if global forces were to enforce protection of indigenous communities affected by the negative effects of urbanization and globalization, then there would be a mitigating effect on anthropogenic climate change. (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)

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

Production and social reproduction are increasingly characterized by its multisitedeness given the rising number of working people migrating for wage work. The ways in which these spheres interplay, both at migrants’ places of origin and at the destination sites of work, differ greatly across societies. Based on primary research in Puerto Gaitán, Colombia—a small town in a largely rural area serving as an agribusiness and oil exploitation hub—I suggest that the complex expressions of the production-social reproduction nexus are intimately (...) connected with the ‘politics of land’. While the town of Puerto Gaitán, as a place of migration, provides for most everyday ‘material’ elements to sustain life (food, shelter, clothing, care, schools, hospitals), other crucial aspects of social reproduction are still heavily performed at indigenous’ rural collective lands (resguardos). Resguardo lands are a key socio-cultural basis of Indigenous peoples’ reproduction, despite serious limitations partly due to their isolation, to restrictions on the free circulation by large landowners, and to historical underlying drivers founded in dispossession. One important analytical and political implication is that migrant workers’ access to land should respond to a broader conceptualization of social reproduction—i.e., in which non-material aspects are equally considered. (shrink)

This study investigates the increased commercialization of African indigenous vegetables (AIV)—former subsistence crops such as African nightshade, cowpea leaves and amaranth species grown mainly by women—from a feminist economics perspective. The study aims to answer the following research question: How does AIV commercialization affect the gendered division of labor, women’s participation in agricultural labor, their decision-making power, and their access to resources? We analyze commercialization’s effects on gender relations in labor and decision-making power and also highlight women’s agency. (...) Based on a mixed method design and analyzing household-level panel data and qualitative focus groups from Kenya, we observe an economic empowerment of women that we relate to women’s individual and collective strategies as well as their retention of control over AIV selling and profits. Yet, while we see economic empowerment of women through commercialization—how they broaden their scope of action and are empowered by generating revenue—that does not contribute to a redistribution of labor or land rights, which are key for gender equality, instead it increases women’s labor burden. (shrink)