Introduction

FormalPara Key Points

• Indigenous and Tribal peoples account for most of the world’s cultural diversity.

• For Indigenous and Tribal peoples, health and wellbeing are culturally bound concepts linked to physical, mental, emotional, and spiritual wellbeing.

• Globally, Indigenous and Tribal peoples experience poorer health outcomes than non-Indigenous peoples, including higher cancer incidence and higher mortality rates.

• Colonization has disrupted established societal structures, economies, and belief systems, and its devastating effects continue to be experienced by Indigenous and Tribal peoples globally.

• This book seeks to address the cancer inequities for Indigenous and Tribal peoples across the world by promoting discussion and including examples of targeted and tailored strategies designed to address them.

According to the United Nations (UN), more than 476 million Indigenous peoples live in more than 90 countries worldwide, constituting 6.2% of the world’s population (Fig. 1.1). Even though globally Indigenous peoples are a numerical minority, we account for most of the world’s cultural diversity, with as many as 5000 Indigenous cultures and over 7000 languages [1].

Fig. 1.1

Overview of the world’s Indigenous peoples. (Adapted from Indigenous World 2023 [3])

Given the diversity of Indigenous peoples and to respect the autonomy of Indigenous and Tribal communities, we do not attempt to provide a universal definition for “Indigenous.” The UN Permanent Forum on Indigenous Issues emphasizes the significance of self-identification and the right to determine one’s identity or membership in accordance with lore, customs, and traditions. This self-identification approach includes seven concepts [2]:

• 1. Self-identification as an Indigenous person at the individual level and accepted by the community as a member.

• 2. Historical continuity with pre-colonial and/or pre-settler societies.

• 3. Strong link to territories and surrounding natural resources.

• 4. Distinct social, economic, or political systems.

• 5. Distinct language, culture, and beliefs.

• 6. Form non-dominant groups of society.

• 7. Resolve to maintain and reproduce ancestral environments and systems as distinctive peoples and communities.

About 80% of the world’s Indigenous peoples live in Africa, Asia, and Latin America. Gaining a precise statistical overview of Indigenous populations poses significant challenges. Under-reporting or misclassification of Indigenous populations occurs globally. In some countries, Indigenous and Tribal peoples are not identified in data collection or are not recognized; in others, the data are inadequate. Some countries lack the infrastructure to collect data for their populations. In addition, some Indigenous and Tribal communities inhabit regions that span contemporary national borders—for example, the Sámi in northern Europe, Samoans who live in Samoa (an independent country) as well as in American Samoa (just 140 miles from Samoa), and Pascua Yaqui who live in both the USA and Mexico [3]. In other countries, Indigenous peoples’ right to be counted is met, with population-level data for Indigenous peoples available and reported.

A range of terms are used globally to describe Indigenous and Tribal peoples. Some countries categorize multiple distinct Indigenous groups under a single umbrella term, such as “Native American” in the USA and “Aboriginal” in Australia; in other countries, the preferred term is “Tribal.” Some countries have many distinct groups of Indigenous peoples, including Bolivia (36 recognized Indigenous groups), Cambodia (up to 24 Indigenous groups), and Kenya (5 Indigenous groups) [3].

Indigenous peoples are diverse, both within and between countries, with distinctive languages and cultural traditions. We live in a wide variety of environments and circumstances. Many, in rich and poor countries alike, continue to face substantial economic, health, and social disadvantages as a result of an enduring legacy of colonization; ongoing marginalization and disempowerment; and the social, structural, and political arrangements of the countries in which we live [1].

Indigenous Knowledge Systems, Land, and Ways of Being

As the First Peoples of a country or region, Indigenous and Tribal peoples have distinct traditions, knowledge systems, and characteristics—spiritual, social, cultural, economic, and political. Many of these traditions stem from deep and familial relationships with ancestral lands, seas, and waterways [1]. Indigenous and Tribal peoples’ understandings and systems of health are holistic; are woven into our relationships with land and place; are fundamentally important to our cultural, spiritual, and physical survival and wellbeing; and are characterized through various practices and responsibilities. Indigenous and Tribal peoples maintain and reproduce ancestral environments and systems in distinctive ways. The collective dimension of this relationship is significant, and the intergenerational aspect is crucial to Indigenous and Tribal peoples’ identity, survival, and cultural viability.

The Cultural Context: What It Means to Be Indigenous

The content for this section emerged from a discussion at our editorial meeting in Hawai‘i in May 2023, with Dr. Marjorie K Leimomi Mala Mau (Director, Center for Native and Pacific Health Disparities Research, University of Hawai‘i). We thank Dr. Mau for her substantial contribution to this section.

While government and international entities (UN, WHO, etc.) have proposed definitions of “Indigenous people,” the question remains: How do we, as Indigenous peoples, define ourselves? What does it mean to be “Indigenous?” Furthermore, how does understanding who we are interface with the concept of health and wellbeing that extends beyond the absence of disease? How do Indigenous peoples, with our various Indigenous ways of life, perceive health, illness, and the healthcare systems that have long ignored us—or, at best, been indifferent to our rights to health alongside non-Indigenous peoples?

The developing interest in defining what it means to be Indigenous is reflected in the growing number of citations in peer-reviewed literature on Indigenous knowledge, traditional ecological knowledge, and ancestral knowledge systems [4, 5]. What is clear is that further investigation on ancestral knowledge is needed, including the voices, stories, and experiences of Indigenous and Tribal peoples as well as interdisciplinary perspectives from sociologists, epidemiologists, anthropologists, psychologists, physicians, and so on.

Dr. Mau provides a useful perspective of this from a Native Hawaiian (NH) perspective. A deeper and evolving understanding of the NH culture, traditional values, and practices that existed prior to the overthrow of the Hawaiian Kingdom in 1893 has activated a growing appreciation of traditional culture. NH culture is recognized as a system of learned and shared beliefs, language, norms, values, and symbols used by members of the culture to identify themselves and provide a framework for life. Culture is seen as both traditional and dynamic: it adapts to other cultures and changing environments and to situations that impact the group.

Today, scores of NH and Pacific communities are revitalizing traditional culture and remaining steadfast in increasing knowledge, practice, and active participation of culture within a modern context. Practitioners of traditional healing, traditional dance (hula), NH language (olelo Hawaiʻi), and deep ocean voyaging and navigation are active throughout Oceania (Pacific region). The widespread use and frequent implementation of traditional culture has allowed Indigenous communities to experience a measurable and reproducible sense of holistic health [6]. For many NHs, the practice of culture has been transformational to their sense of health and wellbeing. A growing number of NH cultural practitioners strongly endorse the idea that culture IS health. This idea resonated for us as an editorial group.

Indigenous and Tribal peoples share the cultural context of “who we are” by knowing and practicing culture and teaching culture across generations. The essence of being Indigenous lies in an intergenerational bond with ancestors (including land and water), a commitment to preserving cultural heritage, and the pursuit of self-governance and rights within the framework of ancestral landscapes and responsibilities.

Indigenous Sovereignty and Self-Determination

In an Indigenous and Tribal context, sovereignty manifests as the inherent right to self-determination and governance over ancestral lands and lives. It embodies the autonomy to uphold cultural practices; maintain distinct social, economic, and political systems; and preserve and build the integrity of Indigenous communities [2]. The United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) is a powerful advocacy tool and a moral and political commitment by states to uphold the rights of Indigenous peoples [2]. UNDRIP is a landmark document that outlines the collective and individual rights of Indigenous peoples around the world. It was the result of more than two decades of negotiation and consultation with Indigenous peoples and states. Some key aspects of UNDRIP include:

• Self-determination rights, including the right to be actively involved in making decisions that affect them.

• Health rights, including rights to traditional medicines and health practices, and rights to access social and health services without discrimination.

• Cultural rights to maintain, control, protect, and develop cultural heritage, traditional knowledge, and traditional cultural expressions.

• Rights of Indigenous peoples to their lands, territories, and resources.

• Rights of non-discrimination, including prohibiting discrimination against Indigenous peoples.

• Language and education rights, including the right of Indigenous peoples to revitalize, use, develop, and transmit their languages, and including culturally appropriate education that reflects history and culture.

• Consultation and consent rights, including the importance of obtaining the free, prior, and informed consent of Indigenous peoples before adopting and implementing measures that may affect them.

Strength and Survival

Indigenous and Tribal peoples have survived and thrived for thousands of years, with worldviews that are grounded in traditions, culture, ceremonies, stories, language, songs, communities, and family. While there is much diversity between and within Indigenous and Tribal peoples globally, there are also notable commonalities such as [2]:

• Indigenous epistemologies of relationality and the interconnectedness of each other, the land and all it encompasses.

• Holistic and collectivist worldviews.

• A shared history of colonization, oppression, resistance, and survival experienced by many (though not all) Indigenous and Tribal peoples around the world.

Indigenous and Tribal communities have established laws and knowledge systems that provide trusted guidance passed on through the generations—including knowledge of medicines, environmental management, ecological and cultural systems, and spiritual knowledge [7]. We, the editors of this book, know and understand the power of learning from and caring for our Indigenous and Tribal Knowledge Holders and Elders. They protect and maintain a deep understanding of their community’s approach to knowing, being, and doing. Indigenous and Tribal Knowledge Holders and Elders teach and guide the next generation their values, traditions, and beliefs through their languages, social practices, arts, music, ceremonies, and customs [3]. Many Indigenous communities are united in their respect for Knowledge Holders and Elders, honoring of history, and understanding that the community stands on the shoulders of ancestors.

Colonization disrupted established Indigenous societal structures, economies, food, health, and belief systems, and its devastating effects continue to be experienced by Indigenous and Tribal peoples globally [8]. For many, colonization brought policies purposefully designed to control the lives of the people. Across the world, traditional lands were confiscated and whole communities were relocated to less desirable places, often with multiple communities co-located on barren land on the outskirts of towns where traditional lifestyles were impossible to maintain. Whole communities became dependent on their colonizers. Many nations enacted deliberate efforts of cultural erasure through racist policies that included prohibition from speaking their native languages, forced separation of Indigenous children from their families (e.g., Stolen Generations in Australia, residential/boarding schools in Canada), and the destruction of kinship systems [2].

Colonization has a profound impact on the health and wellbeing of Indigenous and Tribal peoples globally. Colonizers brought and in some cases deliberately spread new infectious diseases, such as smallpox and measles, for which Indigenous and Tribal populations had no immunity [7]. At the same time, the disruption of traditional lifestyles had a negative impact, with reduced access to healthy food, the fracturing of traditional diets, and the introduction of addictive substances such as alcohol and commercial tobacco [7].

Today, Indigenous and Tribal peoples across the globe experience poorer health outcomes compared to their respective non-Indigenous populations, regardless of the country’s economic and health status. The reasons for these poorer outcomes are complex and multifaceted, including poverty, racism, lower levels of education and employment rates, and difficulties accessing health services [8].

As Dr. Papaarangi Reid notes [9, p. 1]:

… attempts to make sense of the health and well-being of Indigenous peoples is inadequate unless health providers engage critically with the history of their respective nations and any subsequent patterns of privilege or disadvantage. Understanding this history, within the framework of western imperialism and other similar colonial projects, allows us to make sense of international patterns of Indigenous health status.

The legacy of colonization cannot be ignored, and neither can ongoing colonization be accepted unchallenged as an unchangeable driver of health inequities and poorer outcomes for Indigenous peoples. In the face of the ongoing effects of repressive policies and discrimination, Indigenous and Tribal peoples demonstrate remarkable resistance, resilience, and strength. Increasingly, attention is turning to the strengths and knowledges of Indigenous and Tribal peoples, with an acceptance that there is much wisdom and deep understanding to be shared. Indigenous and Tribal peoples offer cultural values that provide strong bonds to family, community, and all that is around us (earth, air, water, sky) in a way that understands and respect “balance” in life.

Indigenous and Tribal Peoples’ Understanding of Health and Wellbeing

For Indigenous and Tribal peoples, health and wellbeing are culturally bound concepts linked to physical, mental, emotional, and spiritual wellbeing. While the Western world frequently sees health as the absence of illness, for Indigenous and Tribal peoples the concept of health is broad and holistic [10].

Definitions of Indigenous health and wellbeing should be driven by Indigenous and Tribal peoples, and this is occurring in some countries [10]. For example, in Australia, the National Aboriginal Community Controlled Health Organisation describes Aboriginal health as [11]:

“Aboriginal health” means not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total well-being of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.

In addition, policies and practices for Indigenous and Tribal communities should reflect and arise from sovereignty and a comprehensive understanding of their holistic conceptions and determinants of health that extend to the collective (family and community), which Carrol et al. describe as “community-driven and Indigenous-nation based” in a way that moves beyond the standard framework of social determinants [10].

Several chapters in this book describe models of healthcare that embody Indigenous collectivist worldviews, enact relationality, and speak to Indigenous concepts of health and wellbeing. In some locations, health services designed by and for Indigenous and Tribal peoples now offer culturally appropriate, strengths-based, effective, and accessible healthcare services. In Australia, for example, Aboriginal Community Controlled Health Organisations deliver holistic, comprehensive, culturally appropriate primary healthcare [11]. These health services—designed by Indigenous peoples and offering services for Indigenous peoples—are an important act of Indigenous sovereignty.

Cancer and Indigenous and Tribal Peoples: A Global Perspective

Cancer remains a major global health issue, and cancer rates and deaths from cancer are increasing around the world. Globally, Indigenous and Tribal peoples experience higher cancer incidence and poorer cancer outcomes. Information about cancer for Indigenous and Tribal populations tends to be either lacking or of subpar quality. Even in countries that have published reports on cancer for Indigenous peoples, many are unable to report national-level data [12]. Aotearoa New Zealand is the only country in the world that can routinely report national-level cancer statistics for its Indigenous population.

Most published reports on cancer in Indigenous populations have originated from four countries: the United States, Canada, Australia, and Aotearoa New Zealand [12]. There are also reports from countries in Africa, in South America, and on Sámi populations in Norway, Sweden, and Finland [13,14,15]. Reports consistently reveal that Indigenous populations face notable disparities compared to non-Indigenous populations in terms of the prevalence of risk factors, incidence of cancer, access to prevention and screening services, stage of diagnosis, quality of care received, and ultimately disease outcomes [12]. While differences exist both between and within countries, Indigenous and Tribal peoples are more likely to have a higher prevalence of risk factors, poorer outcomes, and lower access to prevention and screening. They are also more likely to develop cancers that are largely preventable, detectable through screening, and/or associated with poorer prognoses, such as lung and liver cancers [12].

Despite the challenges posed by limited data, it is evident that cancer is a significant and growing health concern for Indigenous and Tribal populations globally. As presented in Fig. 1.2, Indigenous peoples experience higher death rates from many cancers compared to their non-Indigenous counterparts.

Fig. 1.2

Age-standardized cancer mortality rate (per 100,000) across countries by Indigenous status. (Sources: Australia: AIHW [16], Aotearoa New Zealand: Manatu Hauora [17], USA: Kratzer et al. [18], Canada: Sanches-Ramirez [19])

*Figures are based on the estimates in Alberta. AI/AN: American Indian/Alaskan Native

To eliminate inequities, it is crucial to understand and address their underlying causes. The practical consequences of colonization—including limited access to healthcare, geographical isolation, systemic inequalities, and mistrust of both governments and health systems—tend to result in delayed diagnoses and reduced treatment options. In addition, cultural disconnection can compound the difficulties experienced by Indigenous and Tribal peoples in terms of cancer prevention, treatment, and survivorship. Inequities are driven by unequal access to the determinants of health, with political power at a country level a peak driver of unfair distribution. This demonstrates the link with ongoing colonization through asymmetrical distribution of political power between the colonized and the colonizing, continuing to contribute to inequities. Efforts to improve cancer outcomes must acknowledge and address the structural legacies of colonization in order to foster strong, thriving, culturally safe approaches that empower communities to navigate the complexities of cancer.

The social determinants of health, including poverty and racism, are well-established drivers of health inequities and these contribute to the disparities in cancer outcomes for Indigenous and Tribal peoples [9]. Increased prevalence of other chronic health conditions—including type 2 diabetes, chronic renal failure, and/or respiratory conditions—exacerbates the burden of disease, morbidity, and mortality among Indigenous and Tribal peoples [20]. Cancer care services may not provide adequate treatment for people with comorbidities, which further drives the equity gap [20]. Cancer-causing infections such as Helicobacter pylori and hepatitis B virus, which are also related to poverty and overcrowding, tend to be higher in Indigenous and Tribal populations [20]. Cancer outcome disparities are compounded by health service factors, including limited access to culturally and clinically appropriate healthcare services due to a lack of partnership with Indigenous and Tribal communities and leaders, unresponsive service design and management, and services staffed by a largely non-Indigenous workforce [20]. In addition, cancer control quality assurance mechanisms to monitor and eliminate inequities between Indigenous and non-Indigenous peoples are poorly developed and adhered to at national and service levels in most countries.

Emerging International Leadership and Collaboration

This book is part of a growing international movement to address the cancer inequities experienced by Indigenous and Tribal peoples. In 2014, at the World Cancer Congress, Professor Gail Garvey began to develop an idea for an international forum on cancer among Indigenous peoples. While the World Cancer Congress was a general meeting open to all, Prof. Garvey wanted to create a space to gain a greater understanding of the burden of cancer among Indigenous peoples globally. She envisioned an opportunity to share research findings and cancer control activities related specifically to Indigenous peoples and communities, and identify international research priorities, enhance capacity, and build connections.

Prof. Garvey chaired the inaugural 2016 World Indigenous Cancer Conference (WICC) in Brisbane, Australia, with the theme “Connecting, Communicating, and Collaborating across the Globe.” At the 2016 conference, there was a clear call for ongoing collaboration, leading to the establishment of the World Indigenous Cancer (WIC) Network—a group of people dedicated to improving cancer outcomes for Indigenous peoples around the world [21].

Prof. Garvey co-chaired the second WICC in 2019, in Alberta, Canada, with Dr. Angeline Letendre and Mrs. Lea Bill, on the theme “Respect, Reconciliation, and Reciprocity.” The 2019 conference was attended by over 500 delegates, including leading cancer researchers, public health practitioners, clinicians, advocacy groups, Indigenous community leaders, and people living with cancer.

The third WICC occurred in March 2024, in Melbourne, Australia, chaired by Associate Professor Kalinda Griffiths, on the theme of “Process, Progress, Power.” The 2024 conference included youth and Elder forums to support and guide the next generation of Indigenous leaders.

This book fits within this global effort to address the significant disparities in cancer outcomes and care for Indigenous and Tribal Peoples across the world by bringing people together, promoting discussion, and including examples of targeted and tailored strategies to overcome the myriad challenges to closing the cancer equity gap (Fig. 1.3).

Fig. 1.3

Aboriginal dance group, Nunukul Yuggera, welcomed participants to the inaugural World Indigenous Cancer Conference, Brisbane, Australia, 2016. (Photo: Surge Media)