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Statistical Journal of the IAOS 35 (2019) 47–69 47 DOI 10.3233/SJI-180478 IOS Press First Nations data sovereignty in Canada The First Nations Information Governance Centre First Nations Information Governance Centre, 180 Elgin Street, Suite 1200, Ottawa, ON, Canada Tel.: +1 613 733 1916; Fax: +1 613 231 7072; E-mail: firstname.lastname@example.org Abstract. Drawing on historical and contemporary sources, this paper provides an overview of First Nations perspectives on efforts within the Canadian context to identify First Nations individuals, communities, and Nations in official statistics and other data and ongoing First Nations assertion of data sovereignty. Topics covered include: an overview of pre- and post-contact First Nations history and experiences with the Canadian government and researchers; an overview of the socio-demographic characteristics of the First Nations population in Canada; a description of the data and information contexts within which First Nations operate in Canada; an overview of the current definition(s) and understanding of First Nations data sovereignty; and an overview of efforts to assert First Nations Data Sovereignty in Canada, including the current work to advance these issues. Keywords: Data sovereignty, Indigenous data governance, First Nations data, health data and data systems, OCAP R , nation- based 1. Introduction cieties. Many First Nations societies were matriar- chal, wherein women were highly revered as politi- Drawing on historical and contemporary sources, cal leaders (often choosing male leaders), decision- this paper provides an overview of First Nations ex- makers, and life-givers, and were central to the well- periences with and perspectives on efforts within the being of the family and tribe. This also meant that the Canadian context to identify First Nations individ- family property, wealth, and clan all passed through uals, communities, and Nations in official statistics the female line. Traditionally, gender roles were re- and other data sources. Particular attention is given to garded as equally important, balanced, with both men First Nations-led efforts over the past 20 years to ad- and women working together in their respective du- vance the assertion First Nations Data Sovereignty in ties to ensure the family and community remained in- Canada. Inuit and Métis approaches to official statis- tact. Although this may vary from nation to nation, tics are not covered in detail. Readers are encouraged men were primarily involved in hunting, warfare, craft- to take a distinctions-based approach to understanding ing weapons, and building shelters, while women en- the broader Indigenous Canadian context, which is dis- gaged in horticultural activities – harvesting plants and cussed in greater detail in Section 3. food, making crafts and clothing – and were the pri- mary caregivers of children . Both men and women were responsible for imparting valuable teachings to 2. Historical First Nations context their children. Elders also played a vital role as advi- sors and educators of spiritual and cultural knowledge 2.1. Pre-contact in the community. Since time immemorial, First Nations people had First Nations people have occupied and used lands the ability to determine all their needs and how to best in what is now known as Canada for thousands of meet those needs using the plants, herbs, animals, and years prior to the arrival of Europeans, each possess- the environment to survive, heal, and maintain balance. ing distinct cultural languages, histories, and tradi- Their abilities and decisions were based on years of tional ways of life . Some lived nomadic hunter- knowledge gained through observations, experiences, gatherer lifestyles, while others were agricultural so- and information gathered from their surrounding envi- 1874-7655/19/$35.00 c 2019 – IOS Press and the authors. All rights reserved This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License (CC BY-NC 4.0).
48 FNIGC / First Nations data sovereignty in Canada ronments. Thousands of years of relating to the land Section 91(24) of the Constitution Act, 1867 gave provided the occupants, as stewards, with the knowl- the federal government legislative authority and re- edge and ability to harness their knowledge and pass it sponsibility for “Indians, and Lands reserved for the down to succeeding generations. In this way, First Na- Indians”. Canada signed treaties with First Nations be- tions, as sophisticated societies with sophisticated gov- ginning in 1871 and continuing long after the turn of erning structures, were engaged in research processes, the century. Treaties have traditionally been drafted policy-making, and knowledge sharing as part of their as agreements between nations. There are 11 num- ethical responsibilities as stewards of the land . bered treaties in Canada, as well as other adhesions and treaties signed [6,7]. Many scholars [6,8–13] provide 2.2. Post-contact descriptions of colonization, extermination, and assim- ilation policies, including residential schools, the Six- As Europeans began settling in North America in ties Scoop, and other tactics utilized by the federal gov- the 1400s, including Canada, they relied heavily on ernment that were used to rid Canada of the so-called First Nations for their knowledge and resources to sur- “Indian problem”.1 The Sixties Scoop saw thousands vive the harsh climates and terrain. As independent Na- of Indigenous children “scooped up” (i.e. taken with- tions, First Nations created alliances with Europeans out consent) from their families and communities be- and played a significant role in trade and the econ- tween the 1950’s and the 1980’s by government child- omy, exploration routes, and strategic warfare. As Eu- welfare services, and placed with non-Indigenous fos- ropean desires for increased land and control over trade ter homes and adoptive families, and even in different grew, First Nations people were forced into smaller and countries. smaller tracts of land, which was often away from set- The term “Indian” is a misnomer that was applied tler communities, with limited or no access to the de- to the original peoples of North America by European velopments and inventions of the outside world [1,4,5]. explorers when they first arrived as they believed they The settlers and their governments saw First Nations had landed in India. The Indian Act of 1876 is the fed- people as a problem to be eradicated in order to further eral legislation that allowed, and continues to allow, the their vision of a new nation that expanded from east to Canadian government to control most aspects of Indian west . Over the next two centuries, conflicts arose lives. Under this Act, “Indian” became the legal term over competing interests among the Europeans (Britain to identify an individual who is considered a registered and France) and First Nations over political and mil- status,2 treaty status, or non-status Indian. It also de- itary alliances, the fur trade, land and resources, and fined how status was passed from generation to gen- religious beliefs. eration or terminated [13–15]. The Indian Act resulted Following the end of the Seven Year War in 1763 in three categories of Indians which include: 1) sta- (in which many First Nations fought as British allies), tus Indians who are legally entitled to be registered in Great Britain claimed territory in North America and the federal government’s Indian Registration System; issued the Royal Proclamation of 1763, which gave 2) Treaty Indians who are members of a community recognition to First Nations’ rights to land and title that signed a treaty with the Crown; and 3) non-Status and laid the foundation for defining the future relation- Indians who are not legally entitled to be registered ship between First Nations and the Crown, including in the Indian Registration System. Other terms that a framework for negotiation of Indian treaties. In or- have often been used interchangeably with “Indian” der to obtain the land needed for farming, the British include: North American Indian, Native, and Native Crown entered into treaties with Indigenous peoples American. Today, the most commonly used contempo- during the 18th century. They also established an In- rary term is First Nations, a term that was adopted by dian Department that dealt specifically with matters related to First Nations, such as maintaining peaceful most First Nations leaders themselves, and can be seen relations, securing land and resources, and protecting as an act of self-determination. The Indian Act also the interest of the British Crown. In the years that fol- lowed, there was a shift in the relationship between 1 Duncan Campbell Scott, as Deputy Superintendent of the De- First Nations and the settlers. First Nations were pro- partment of Indian Affairs, used this term in a letter to British gressively pressured into surrendering vast amounts of Columbia Indian Agent General Major D. MacKay, in response to Dr. Peter Bryce’s 1907 Report on Indian Schools of Manitoba and lands and territories, renouncing their traditional be- the Northwest Territories. liefs and way of life, and integrating into the European 2 The Indian Act specifies the conditions for an individual’s enti- culture. tlement to be registered as a status Indian.
FNIGC / First Nations data sovereignty in Canada 49 governs “Lands Reserved for Indians” and therefore believed that it would lead directly to assimilation and created what is known as Indian reserves, which are cultural genocide . dedicated tracts of land owned by the British Crown Aboriginal Peoples, regardless of status and resi- “for the use and benefit of a [Indian] band”. Treaties dency, have a special constitutional relationship with between First Nations and the Crown were also negoti- the Crown, including existing Aboriginal and treaty ated and signed and this saw the transfer of large tracts rights, which is recognized and affirmed in section 35 of land in return for certain provisions and promises of the Constitution Act, 1982. As described above, in laid out in the respective treaty. Readers should also this Act, “Aboriginal peoples of Canada” includes the note that the terms “Aboriginal” (as found in the Con- Indian, Inuit, and Métis peoples of Canada. Follow- stitution Act, 1982) and “Indigenous” are the collective ing Canada’s support of the United Nations Declara- nouns used to refer to First Nations, Inuit, and Métis tion on the Rights of Indigenous Peoples (UNDRIP) in peoples and should not be used in the Canadian con- 2010, the federal and provincial governments, as well text except to refer to these three distinct peoples col- as many Aboriginal groups and organizations, have lectively. moved to support the use of the term Indigenous, rather The dominant colonial government imposed patri- than the term Aboriginal. archy on First Nations societies and negatively influ- In 2015, Canada committed to a renewed nation-to- enced traditional gender roles, leadership structures, nation relationship, based on the recognition of rights, and governance – diminishing women’s roles and re- respect, cooperation, and partnership with Indigenous inforcing inequality between the sexes. Enfranchise- peoples in Canada. In a statement by Prime Minis- ment, the foundation of Canadian Indian policy, was ter Justin Trudeau, Canada vowed to fully implement- the process by which Indians lost their registered In- ing the 94 Calls to Action of the Truth and Recon- dian status and were assimilated into the dominant ciliation Commission of Canada (TRC) to eliminate the socio-economic gaps and improve the well-being Canadian society. Those First Nations individuals who of Indigenous Peoples in Canada . Canada fur- enlisted in the Canadian military, who enrolled in uni- ther declared that the UNDRIP would be fully im- versity, or who became priests, lost their Indian status plemented into Canadian law, including Article 19 on and were “enfranchised”, becoming so-called civilized requirements of states to obtain the free, prior and Canadian citizens. The discriminatory treatment of In- informed consent (FPIC) of Indigenous peoples on dian women and their descendants was also reinforced any decisions that would impact them. Although they in the status provisions of the Indian Act. Status Indian have made many grand promises, some commenta- women who married non-First Nation men lost their tors have questioned Canada’s true intentions. In a Indian status, including the ability to transfer status to May 30, 2018, MacLean’s article, Dr. Pamela Palmater their children. First Nations men marrying non-First stated that “it would be just one of the dizzying num- Nation women could not only preserve Indian status ber of explicit promises that Trudeau would break by but also saw their spouses gain Indian status, as well as purchasing the Trans Mountain pipeline from Kinder their children. These provisions severed First Nations Morgan for $4.5 billion” . Despite a recent Fed- women and children from their culture, identity, and eral Court of Appeal decision to disallow Canada’s traditional lands. Trans Mountain pipeline expansion project on the ba- Further discriminatory legislation and policies sis that Canada did not fulfill its duty to consult with banned cultural ceremonies and practices, created re- affected First Nations, Canada has vowed to move for- serves, outlawed or restricted the selling of produce or ward on the pipeline . In February 2018, Minis- other resources from reserves, and forced children and ter Trudeau announced that Canada would develop, youth to attend residential schools. The Pass System, in partnership with Indigenous Peoples, a transforma- an unlawful Canadian policy, ensured that First Na- tive Recognition and Implementation of Rights Frame- tions people could not freely move off reserve without work. Analysis done by the Yellowhead Institute re- the written consent of the appointed government agent, veals that “the Rights Framework expresses a clear and known as an Indian agent [7,16]. The White Paper of coherent set of goals, which aim to suppress Indige- 1969 was yet another attempt by the Canadian govern- nous self-determination within Canadian Confedera- ment to terminate the special legal relationship with tion”  and eliminate federal responsibility under First Nations and eliminate the Department of Indian the Indian Act. Affairs. This policy was soundly rejected by First Na- Over the past century, First Nations have been con- tions leaders and communities across Canada as many tinuously subjected to expensive litigation by different
50 FNIGC / First Nations data sovereignty in Canada levels Canadian government to challenge and defend our data, which is an extremely valuable renewable re- their inherent and constitutionally protected rights. De- source” . First Nations sovereignty over informa- spite the myriad and complex challenges, First Nations tion and data is a crucial step toward changing the re- in Canada remain unwavering in their aspirations and search paradigm, as well as achieving respective na- efforts to have their full rights as self-governing nations tions’ self-governance aspirations and exercise of self- and original inhabitants of the land recognized and determination. respected. First Nations rights transcend the reserve boundaries, the Indian Act, and government policy. In- tegral to these rights are concepts of data sovereignty 3. The national First Nations picture and information governance. Further, there is a long history in Canada of First Nations peoples and com- In 2016, 1,673,785 people in Canada identified munities being subjects of research, including uneth- themselves as Aboriginal – making up 4.9 percent of ical medical, health, and social research by academic the total population . Of those, 977,230 (58.4 per- and government researchers. cent) were First Nations, 587,545 (35.1 percent) were Much of the literature on First Nations peoples Métis, and 65,025 (3.9 percent) were Inuit . Widely has been written from a colonial perspective result- dispersed across Canada, each Aboriginal group pos- ing in a limited representation and oftentimes stereo- sesses diverse cultural heritages, histories, distinct lan- typical and damaging depictions of First Nations peo- guages, customs, and traditional lands. ples. For years, different types of research and re- In 2016, First Nations people accounted for 2.8 per- search instruments have been conducted on First Na- cent of the total population of Canada. Many First Na- tions in an attempt to better understand their expe- tions belong to an Indian band, reside in a First Na- riences, health status, and their socio-economic and tions community (Indian reserve) or crown land, or cultural environments. Although data can help iden- live off-reserve in rural, remote or urban centre. Sta- tify priorities, set strategic goals, and support commu- tus First Nations account for three quarters (744,855) nity planning, many First Nations communities have of the population, while the remaining 232,375 (23.8 experienced their community’s data being used for percent) were non-status . The census data found other purposes and not in their best interests or benefit. that, among the status First Nations people, over half As the Alberta First Nations Information Governance (55.8 percent, 415,629) lived off-reserve, while the Centre (AFNIGC) has noted, “[t]he content and pur- other 44.2 percent (329,226) lived on-reserve. The ma- poses of data have historically been determined out- jority (97.8 percent) of non-status First Nations lived side of First Nations communities, and the misuse of off-reserve . Figure 1 is a map that illustrates where data has led to situations of misappropriation and bro- First Nations communities are located in Canada, as ken trust” . Further, data collection through gov- well as shows their status symbolized as the Indian ernment agencies has been used against communities Act, the First Nations Land Management Act, or Self- to extract children from their families during the resi- Government . dential schools era and the ‘60’s scoop: “Government According to the federal government there are cur- agents knew of families and their children because rently 636 recognized Indian bands in Canada possess- those parents had shared information with government ing more than 50 distinct languages . The 2016 agents through registry programs, legal involvement, Canadian Census of Population showed that First Na- or other course of life activities” . As a result of tions peoples are mainly concentrated in the western this deep communal and personal loss, the mistrust in provinces, with over half living in British Columbia, the system resulted in the withdrawal from sharing per- Alberta, Saskatchewan, and Manitoba. Among the sonal information and engagement with government provinces, Ontario had the highest percentage (24.2 systems. The legacy of unethical research practices percent) of First Nations peoples, while 9.5 percent experienced by First Nations communities had led to lived in Quebec, 7.5 percent in the Atlantic Provinces, their mistrust in research and information sharing with and 2.1 percent in the territories . Figure 2 is a non-First Nations researchers, institutions, and govern- map showing the distribution of the total Aboriginal ments. Increasingly, First Nations’ citizens and lead- population of each province or territory . Readers ers “acknowledge and act on the premise that informa- should note the high percentage of unique languages in tion needs defending and protecting; just as we protect the province of British Columbia alone, as well as the our lands, forest, animals and fish, we need to protect diversity of geography in this and other regions.
FNIGC / First Nations data sovereignty in Canada 51 Fig. 1. First Nations in Canada. This map illustrates where First Nations communities are located in Canada, as well as shows First Nations status symbolized as the Indian Act, the First Nations Land Management Act or Self-Government. Source: Indigenous and Northern Affairs Canada, Geomatics Services, November 2017. Fig. 2. Regional Aboriginal Population Proportions. This map shows the distribution of the total Aboriginal population (N = 1,673,780) of each province or territory. Source: Statistics Canada, Census of Population, 2016. Indigenous Services Canada/Crown and Indigenous Relations and Northern Affairs Canada, Strategic Research and Statistics Directorate tabulations, 2018.
52 FNIGC / First Nations data sovereignty in Canada Fig. 3. Population Pyramid of the First Nations and non-Aboriginal Populations, Census 2016. This graph illustrates a population pyramid that compares the proportions, by sex and five-year age increments, of the First Nations and the non-Aboriginal Canadian populations in 2016. Source: Statistics Canada, Census of Population, 2016. First Nations Information Governance Centre tabulations, 2018. There is a steadily increasing urbanization of First In 2016, women and girls accounted for 51.7 per- Nations peoples which can be attributed to factors such cent (505,725) of the First Nations population com- as mobility (education, employment, family needs), pared to 48.2 percent (471,510) for men and boys . changes in self-reported identity, or demographic Although First Nations children accounted for 4.9 per- growth. The First Nations population is young in age cent of all children aged 0 to 4, they accounted for 41.4 and rapidly growing. Among status First Nations, the percent of all foster children in this age group who are growth rate was higher for off-reserve (+49.1 percent) living in private homes . in comparison to the on-reserve population (+12.8 per- Language and culture are strong indicators of First cent) from 2006 to 2016 . Nations identity, resilience and overall well-being, at In 2016, the average age was 30.6 years, ten years the individual and community levels. First Nations lan- younger than the general Canadian population (40.9 guages embody the histories, worldviews, and realities years). Figure 3 shows a population pyramid that com- of First Nations peoples. In the past 20 years, commu- pares the proportions, by sex and five-year age incre- nities have been moving towards revitalizing and pre- ments, of the First Nations and the non-Aboriginal Canadian populations in 2016 . The age structure serving First Nations languages in Canada as an es- of the First Nations population is much younger than sential step to healing and Nation rebuilding. Accord- the rest of the non-Aboriginal Canadian population. ing to the 2016 Census, only 21.3 percent of First Na- One-third (29.2 percent) of the First Nations popula- tions people reported being able to have a conversation tion were 14 years of age or younger, while 6.4 percent in an Aboriginal language . According to Statis- were 65 years of age and older . This is in contrast tics Canada,3 nearly half (44.9 percent) of First Na- to the aging Canadian population, where seniors out- number children (16.9 percent vs 16.6 percent). From 3 As discussed in the following sections, First Nations have long 2006 to 2016, the First Nations population rose by 39.3 noted the reliability of many data sources including the Canadian percent . In addition, 46.7 percent of individuals Census and this is precisely why there has been a decades-long push are under age 25, compared to 28.4 percent for the rest for by First Nations, for First Nations data collection and analysis of the Canadian population . efforts.
FNIGC / First Nations data sovereignty in Canada 53 tions living on-reserve are able to speak an Aboriginal ucation attainment, First Nations people experienced language compared with 13.4 percent of those living higher unemployment and lower earnings, and were off-reserve . Non-status First Nations people, who less likely to be employed in higher paying “knowl- make up 23.8 percent of First Nations, are facing lan- edge occupations” as compared to non-Aboriginal peo- guage loss with only 1.9 percent being able to converse ple . in an Aboriginal language compared with 27.3 percent of status First Nations . Housing and living conditions of First Nations peo- 4. Contemporary statistical context ples continues to be plagued by problems such as over- crowding, poor conditions, requiring major repairs, Multiple sources and systems of information and lack clean water, and lack of access to safe and af- data on Aboriginal peoples have been created with- fordable housing. In 2016, nearly one-quarter (24.2 out much or any Aboriginal involvement or input, as percent) of First Nations peoples lived in a dwelling many scholars have noted: “[D]ata collection efforts in need of major repairs . Status First Nations such as the census and broad reaching surveys were living on-reserve were more likely than those liv- conducted with little input from Indigenous commu- ing off-reserve to live in a dwelling in need of ma- nities and peoples” . Consequently, these existing jor repairs (44.2 percent vs. 14.2 percent) . Sta- data sources often provide a fragmented and incom- tus First Nations also experienced higher crowding plete picture of the realities of Aboriginal peoples in conditions on-reserve (36.8 percent) than those living Canada. off-reserve (18.5 percent) . According to the As- Accessing current, quality data on First Nations peo- sembly of First Nations (AFN), in March 2018 there ples remains a complex issue with numerous chal- were 81 long-term drinking water advisories in 56 First lenges and considerations. Due to the variability in the Nations communities affecting 45,000 citizens across collection and reporting of data, and the variance in the Canada . kinds of information collected regionally and nation- In general, First Nations people experience lower ally, it is difficult to access accurate, reliable, useful, socio-economic status in comparison to the rest of and comparable data regarding First Nations peoples. Canadians. Many First Nations are faced with bar- First Nations require access to existing data to help in- riers such as high rates of poverty, unemployment, form their communities’ planning and programs, how- lower education, victimization, loss of culture and ever “[it] is not routinely used in planning and advo- language, homelessness, lack of access to resources, cacy for the benefit of First Nation communities,” lead- poorer health, food insecurity, high incarceration rates, ing many to ask why “meaningful, relevant, and useful and high rates of suicides and intergenerational trauma. data not been put into the hands of those who can use In 2015, the employment rate for First Nations people it?” . aged 25 to 54 was 62.4 percent, compared to 81.8 per- Many First Nations experience arduous reporting re- cent for non-Aboriginals . The unemployment rate quirements with regard to federal funding, however, was more than double (13.2 percent) for First Nations resulting data collected are not being effectively ana- aged 25 to 54 than for non-Aboriginal people (5.7 per- lyzed and used to advance the well-being of First Na- cent) . First Nations aged 25 to 54 have lower rates tions. Data created and used to administer the Indian for labour force participation (71.9 percent), compared Act and federal programs are federal data. Though of- to 86.7 percent for non-Aboriginal people . ten collected by First Nations, they support federal pro- The 2018 Spring Report of the Office of the Au- grams. Further, more often than not, their quality is not ditor General of Canada, which examined the socio- high. And, as successive reports of the Auditor Gen- economic gaps between on-reserve First Nations and eral of Canada have pointed out, the relevance of these other Canadians, revealed that the education gap is data to communities is often not clear. Multiple reports growing. It also indicated that on-reserve high school are filed, but correspond little to community plans or graduation rates of 1 in 2 reported by Indigenous Ser- priorities. vices Canada (ISC) may actually be closer to 1 in The 2018 Spring Report of the Auditor General 4 . According to Statistics Canada, in 2015, 47.1 of Canada reported on completed performance audits percent of First Nations people completed postsec- of government programs and activities, including two ondary education, compared to 69.6 percent of non- chapters specific to First Nation and Indigenous peo- Aboriginal people. As a result of lower levels of ed- ples: Socio-economic Gaps on First Nations Reserves
54 FNIGC / First Nations data sovereignty in Canada Table 1 First Nations counts for Canada by sex, status, and type of residence, census of population, 2016 Total no. Male Female On reserve and crown land1 Off reserve1 status1 Registered or treaty 744,850 358,645 386,210 329,340 415,510 Non-registered or treaty status1 232,380 112,860 119,515 5,040 227,335 Membership in a First Nation or Indian band2 792,140 381,105 411,030 332,675 459,460 Total1 977,230 471,505 505,725 334,380 642,845 Source: Statistics Canada, Census of Population, 2016. Note: Counts do not always add up perfectly due to rounding and differing population universes as noted below. 1 Estimate based only on respondents who self-identified as First Nations; excludes those who did not. 2 Users of the detailed First Nation and Indian band data from the 2016 Census should be aware that these data should not be used as official counts of First Nations and Indian bands in Canada. Users should refer to the individual First Nations or Indian bands for counts of their members. examines Indigenous Services Canada (ISC) and Em- interruption of enumeration prior to completion or to ployment Training for Indigenous People – Employ- denial of permission by community leadership to ad- ment and Social Development Canada (ESDC). Both minister the census. These issues impact estimates of chapters concluded that ISC and ESDC did not suf- the First Nations identity population, the Registered or ficiently use collected data, nor did they sufficiently Treaty Indian population, the population who reported measure or report whether their programs achieved membership in a First Nation or Indian band, and the their goals to close the socio-economic gaps . The population living on Indian reserves and Indian settle- National Chief of the Assembly of First Nations, Perry ments . Bellegarde, expressed concern that “Canada is requir- Additional questions in the long form census were ing data and then not using it effectively to improve the asked to determine classification, with regard to Indian lives of First Nations people” . status, First Nation or Indian band membership, and residence on an Indian reserve or settlement. Of those 4.1. Canadian census identified as First Nations, 744,855 persons (76.2 per- cent) reported having registered or treaty Indian sta- At present, the most recent statistical data on tus , with Registered Indians defined as “persons Canada’s First Nations population is from 2016 and is who are registered under the Indian Act of Canada,” derived from two main sources, each with its own lim- and Treaty Indians defined as “persons who belong to a itations with regard to accuracy. The mandatory 2016 First Nation or Indian band that signed a treaty with the Census, administered by Canada’s national statistical Crown” . However, when considering the estimate agency, Statistics Canada, is one main source of pop- based on the total sample of respondents who answered ulation data and captures the broadest range of First the status question (beyond those who identified as Nations (“North American Indian”) identity definitions First Nations), 820,120 persons in Canada hold regis- and thus gives the highest population estimate of 977, tered or treaty Indian status . Respondents were in- 235 people with self-reported First Nations identity na- structed to exclude persons who had not registered un- tionwide . Table 1 shows the First Nations popula- der provisions of the Indian Act, even if they were en- tion counts from the 2016 census by sex, type of resi- titled to do so . dence, status, and band membership, where such infor- Another distinct yet overlapping census classifica- mation is available [37,38]. tion is “Membership in a First Nation or Indian band,” Although the short form national census aimed to referring to whether a person is a member of “a body include all individuals who reside in occupied pri- of Indians for whose collective use and benefit lands vate dwellings in Canada, the long form census (also have been set apart or money is held by the Crown, or known as the National Household Survey, or NHS), who have been declared to be a band for the purpose from which enumeration of people with First Nations of the Indian Act” . The 2016 Census estimates identity is derived, samples 25 percent of the popu- that 792,140 persons hold this classification . Note lation , therefore introducing sampling error into that for this purpose “First Nation” and “Indian band” the results; however, this error is minimized due to share the same definition and that the distinction in ter- the achievement of a 96.9 percent response rate . minology reflects how certain First Nations choose to Although the census is the only Statistics Canada in- identify themselves. Statistics Canada also points out strument that collects data in First Nations commu- that it is not always necessary for a band member to be nities and reserves, there were 14 such communities a Registered Indian, as many First Nations have exer- that were “incompletely enumerated” in 2016, due to cised the right to establish their own membership code.
FNIGC / First Nations data sovereignty in Canada 55 Table 2 Further, they note that due to the incomplete enumera- Registered Indian population by sex and type of residence, Decem- tion issue described above and the self-response nature ber 31, 2017 of the census data, these may differ from First Nations’ Total no. Male Female administrative data and should not be considered offi- On reserve and crown land 502,016 258,510 250,506 cial estimates of membership counts . As defined Off reserve 478,504 227,548 250,956 in the census, “On reserve” refers to Indian reserves Total 987,520 486,058 501,462 and settlements, and all other areas are referred to as Source: Indigenous Services Canada/Crown Indigenous Relations “Off reserve” . and Northern Affairs Canada, Indian Registration System, Decem- ber 31, 2017. Document prepared by: Statistics Team; Strategic Re- search and Statistics Directorate; Planning, Research and Statistics 4.2. Indian Registration System Branch; Chief Finances, Results and Delivery Officer (CFRDO) Sec- tor, August 24, 2018. The second main source of data on First Nations Table 3 population counts is the Indian Registration System Registered Indian population for Canada by region, December 31, (IRS) maintained by Crown-Indigenous Relations and 2017 Northern Affairs Canada, formerly Indigenous and Total no. Total (percent) Northern Affairs Canada (INAC), which only includes Atlantic 65,289 6.6 registered status First Nations living on or off-reserve. Quebec 88,967 9.0 Further, life event (i.e., births, deaths, migration be- Ontario 213,232 21.6 Manitoba 159,023 16.1 tween or off reserves or outside of Canada) data is up- Saskatchewan 156,828 15.9 dated by the bands with varying frequencies, meaning Alberta 128,351 13.0 that the IRS numbers may not represent the true popu- British Columbia 146,952 14.9 lation at a given time . As of December 31, 2017, Yukon 9,456 1.0 Northwest Territories 19,422 2.0 the IRS included 987,520 registered First Nations indi- Total (Canada) 987,520 100.0 viduals in 618 bands. It is important to note that the In- Source: Indigenous Services Canada/Crown Indigenous Relations dian Register does not distinguish between Indian Act and Northern Affairs Canada, Indian Registration System, Decem- reserves and lands affiliated to First Nations operating ber 31, 2017. Document prepared by: Statistics Team; Strategic Re- under Self-Government Agreements (SGAs). search and Statistics Directorate; Planning, Research and Statistics Branch; Chief Finances, Results and Delivery Officer (CFRDO) Sec- Derived from the Indian Act, the IRS definition of tor, August 24, 2018. a reserve is “a tract of land, the legal title to which is vested in Her Majesty that has been set apart by Her cial surveys, health services utilization records, and Majesty for the use and benefit of a band.” To deter- surveillance systems . The Canadian Commu- mine counts of registered individuals living on reserve nity Health Survey (CCHS), administered by Statis- and crown land, the Indian Register includes those who tics Canada, collects information on the health status, “reside on lands legally defined as Indian reserves, health care system use and determinants of health of on Indian settlements usually represented by Crown the Canadian population. The CCHS is not adminis- Lands and on other lands affiliated to self-governing tered to First Nations peoples living on-reserve. Ad- First Nations,” while the off-reserve counts include ditionally, on-reserve First Nations are not included “individuals affiliated to First Nations who may re- in the Aboriginal Peoples Survey (APS) – a national side neither on reserve nor on Crown land according survey that collects social, economic, and cultural in- to the Indian Register” . At December 31, 2017, formation of First Nations peoples living off-reserve. there were 3,247 reserves, but not all are inhabited: of Coverage and data collection in Canadian govern- the registered First Nations population, 502,016 peo- ment data initiatives/surveys is also a major chal- ple were living on reserve and crown land and 478,504 lenge when considering different First Nations con- were living off reserve. Table 2 shows the Registered texts/environments, such as on or off-reserve and status First Nations population counts from the IRS, by sex or non-status First Nations. and type of residence , and Table 3 shows the Reg- While the provinces and territories are responsible istered First Nations population from the IRS by re- for the administration and delivery of health services gion . to Canadians, the provision of health care services to Some of the main sources of statistical health data First Nations is the responsibility of the federal govern- in Canada are under federal jurisdiction, and include: ment. The major sources of Canadian administrative Census, vital registration, national health and so- health data are collected from provincial and territorial
56 FNIGC / First Nations data sovereignty in Canada health agencies, such as vital statistics, disease surveil- the quality of the registration lists is potentially in- lance registries, health care utilization, health insur- accurate and limited to First Nations that are regis- ance registries, and social surveys, and stored in a vari- tered . Postal code has been used as a proxy, how- ety of health system databases. For instance, the Cana- ever, these are limited to areas where the large major- dian Institute for Health Information (CIHI) manages ity of the population is First Nations . These large multiple Canadian health databases and works with data gaps have made it more difficult to obtain a com- a broad range of partners to provide health data and prehensive, clear picture of the health status of First information. Since Canadian health data have unique Nations in Canada. identifiers, records across different databases may be In the past 20 years, there have been some significant linked for research purposes. Together, these systems advances in the First Nations health information en- produce a vast amount of quality health information vironment. Progressive practices have been, and con- to be used for evidence-based decision-making to im- tinue to be, identified that are assisting to fill in the First prove quality of care and patient health outcomes. For Nations patient identifier gaps of the health data ini- instance, the Health Insurance Registry captures demo- tiatives and systems across Canada . Some of ini- graphic information of anyone who was alive and eligi- tiatives to identify First Nations individuals in health ble to receive health care in the fiscal year. Status First database systems  include: Nations people are covered under the Non-Insured – Mustimuhw Community Electronic Medical Health Benefits Program (which is transitioning from Record: a community-based health information Health Canada’s First Nations and Inuit Health Branch system for First Nations health centres that is de- to Indigenous Services Canada) and receive health signed and owned by First Nations (Cowichan services and benefits that are not insured by provin- Tribes) and reflects the needs and values of cial and territorial governments such as dental, vision care, prescription drugs, medical supplies, and med- First Nations. The system respects the princi- ical transportation costs. However, First Nations still ples of OCAP R (Ownership, Control, Access, hold provincial and territorial health insurance and are and Possession) and is currently deployed in over included in the provincial and territorial health reg- 50 First Nations/sites in three provinces: British istries . The Canadian Chronic Disease Surveil- Columbia, Manitoba, and Saskatchewan. lance System (CCDSS), administered by the Public – Ontario Cancer Registry/Indian Register Link- Health Agency of Canada, uses linked administrative age (1968–2001): involved linking Ontario First data from provincial and territorial surveillance sys- Nations from the Indian Registry with provin- tems, such as the Health Insurance Registry, to gener- cial databases (Ontario Mortality Database and ate national estimates and trends on over 20 chronic the Ontario Cancer Registry) to provide general diseases. population comparison data on cancer incidence, Researchers have identified the absence of ethnic mortality and survival in First Nations. identifiers at all levels as a key challenge to Indige- – Unama’ki Client Registry (UCR) and Data Link- nous coverage in health data systems . This has age Model: an anonymous electronic registry of been a longstanding oversight for many reasons, in- five Unama’ki First Nations (Eskasoni, Member- cluding Canada’s emphasis on assimilation, the his- tou, Potlotek, Wagmatcook, and Waycobah) in toric indifference to cultural specificity, and misuse of Cape Breton – that involves the linkage First Na- appropriate nomenclature. Concerns include the fact tions, federal and provincial government adminis- that “inconsistencies in First Nations, Inuit, and Métis trative data to assist First Nations in their analysis ethnic identifiers in provincial health data collected and health planning. through vital registration systems, hospital administra- – Newfoundland and Labrador Indigenous Admin- tive datasets, and acute and chronic disease surveil- istrative Data Identifier Standard: designed to lance systems means that these populations are often “enable the records of Indigenous persons to invisible in health statistics” . There is also a “sys- be specifically identified, enabling users of data tematic exclusion of subpopulations of First Nations to more accurately plan, deliver, and measure people from health data initiatives according to place the effectiveness of programs and services pro- of residence or Indian Act grouping” . Record link- vided to Indigenous persons in Newfoundland ing provincial/territorial health datasets to First Na- and Labrador as well as monitor health out- tions registry lists provide a partial solution, however, comes” .
FNIGC / First Nations data sovereignty in Canada 57 4.3. First Nations regional health survey Indian Registry counts from 2014 of those living on reserve or on Crown land. Input and feedback were Under complete First Nations control, the First Na- received from regional advisory committees, Regional tions Information Governance Centre (FNIGC), with Coordinators, regional data analysts, and key stake- its ten regional partners, designs and delivers unique holders. As part of the RHS Phase 3 development pro- data-gathering initiatives such as the First Nations cess, the questionnaire content of the previous phases Regional Health Survey (RHS), First Nations Early of the RHS underwent extensive review and revi- Childhood, Education and Employment Survey (FN- sions. Comparability, non-response, and write-in an- REEES), First Nations Community Survey, and a new swers were carefully assessed, and new themes were First Nations Labour and Employment Development added to the core components based on extensive feed- Survey (FNLED), which provide an abundance of back. In many regions, survey questions were devel- credible, culturally-relevant information about First oped to address issues specific to First Nations people Nations people living on reserve and in northern com- living within their respective region. Prior to deploy- munities. ment, the RHS undergoes an ethical independent re- In existence since 1994, though originally envi- view process to ensure its scientific and ethical accept- sioned as a longitudinal study, RHS is the only national ability. health survey of First Nations living on reserve and in northern communities in Canada. The RHS is a cross- sectional survey designed to measure the health, well- 5. The reconciliation context being, and social determinants of First Nations chil- dren (0–11 years), youth (12–17 years), and adults (18 The 2015 Summary of the Final Report of the Truth years and over). Information gathered provides useful and Reconciliation Commission (TRC) of Canada insight into timely issues and expands First Nations’ highlighted that “better research and data are also re- knowledge of the strengths, resiliency, and conditions quired in order to monitor and develop strategies to re- of First Nations. The RHS concluded its third phase duce the overrepresentation of Aboriginal children in of data collection in the fall 2016 and released a two- care” . The report also noted that the federal gov- volume report in 2018. ernment has failed to close the gap in health gap be- The RHS provides unparalleled insight into a wide tween Indigenous and non-Indigenous peoples. They array of factors, from language and culture to health- “moved backwards” on Indigenous health by termi- care access and food security, which affect the health nating funding to Aboriginal health organizations, in- and well-being of First Nations people. It collects and cluding the Aboriginal Healing Foundation and the explores data related to health-care access, language, National Aboriginal Health Organization, which were culture, nutrition, food security, physical activity, and “committed to models of research and treatment in personal and community wellness. In their evaluations which Aboriginal communities have ownership, con- of the RHS survey and processes, both the Harvard trol, access, and possession. Their loss significantly Project on American Indian Economic Development limits the development of accurate information about and the Johns Hopkins University Bloomberg School health issues and solutions under Aboriginal con- of Public Health recognized the RHS, an Indigenous- trol” . led instrument to assess the health of Indigenous The TRC’s 94 Calls to Action address the need for populations, as “a uniquely successful model world- improved research and the development of measurable wide” . The high completion rates of the RHS and goals to close the health gaps experienced by Indige- nous Peoples in Canada. Calls to Action 19 and 65, in other surveys have made the FNIGC and its regional particular, call upon the federal government to: partners Canada’s premier source of information about First Nations people living on reserve and in northern 19. Establish [in consultation with Aboriginal peo- communities. The community-based delivery of suc- ples] measurable goals to identify and close the cessive survey cycles – as well as workshops, con- gaps in health outcomes between Aboriginal and ferences, and training – have helped build community non-Aboriginal communities, and to publish an- data governance and management capacity. nual progress reports and assess long-term trends. RHS surveys are typically conducted in the home Such efforts would focus on indicators such as: using computer-assisted personal interviewing (CAPI). infant mortality, maternal health, suicide, mental In Phase 3, the sampling frame was based on INAC health, addictions, life expectancy, birth rates, in-
58 FNIGC / First Nations data sovereignty in Canada fant and child health issues, chronic diseases, ill- cultural heritage, traditional knowledge and traditional ness and injury incidence, and the availability of cultural expressions, as well as their right to maintain, appropriate health services. control, protect and develop their intellectual property 65. Through the Social Sciences and Humanities over these” . Data sovereignty is a crucial step to- Research Council, and in collaboration with Abo- ward realizing full self-government of First Nations. riginal peoples, post-secondary institutions and ed- The concept of Indigenous data sovereignty emerged ucators, and the National Centre for Truth and Rec- in the late 20th century and has developed significantly. onciliation and its partner institutions . . . establish a Through its work, FNIGC has given expression and national research program with multi-year funding practical meaning to the concept of First Nations data to advance understanding of reconciliation . sovereignty as it relates to First Nations data and infor- mation. This reflects First Nations’ desires and inter- ests to govern and manage information in ways that are 6. First Nations data sovereignty consistent with Nations’ respective laws, practices, and customs. The US Indigenous Data Sovereignty Net- Historically, in international contexts, the notion of work defines Indigenous sovereignty as “the right of a “sovereignty” has held many different meanings and nation to govern the collection, ownership, and appli- definitions. It has been understood to include various cation of its own data”. It derives from tribes’ inher- aspects of a nation’s or state’s recognized right and le- ent right to govern their peoples, lands, and resources. gitimacy to exercise authority over its affairs, a right to This conception of data sovereignty positions Indige- self-government, non-intervention, and freedom from nous nations’ activities to govern data within an In- interference in internal affairs. It also entails a respon- digenous rights framework” . sibility to protect and ensure the wellbeing of its citi- First Nations in Canada have an intimate relation- zens . A sovereign nation/state has the jurisdiction ship with and deep connection to their information, to govern, make laws, manage, control, and make deci- knowledge, and data, particularly traditional or sacred sions about their own peoples. With any sovereign au- knowledge (teachings and ceremonial practices) that thority also comes the right and responsibility to exer- have been passed down from many generations to the cise jurisdiction in relation to information governance next. This also applies to human biological data and In- – to protect and govern all aspects of their citizens and digenous people’s spiritual connection and cultural be- nation’s information and data. Data sovereignty means liefs related to their DNA and genetic information. In “managing information in a way that is consistent with Arizona, the Havasupai Tribe were successful in repa- the laws, practices and customs of the nation-state in triating their genetic data and information following which it is located” . its authorized use in a research study, and celebrated First Nations have an inherent and constitutionally through ceremony. In Canada, there is a strong move- protected right to self-government. This inherent right ment to reclaim First Nation identities through control stems from sovereignty which existed prior to the ar- of information and the ability and authority to telling rival of European settlers. This includes jurisdiction one’s own stories with the data through an Indigenous over their education, laws, policies, health, and infor- lens. It has become clear that the next step is for First mation. First Nations’ rights are also supported by in- Nations citizens to rebuild their respective Nations and ternational instruments such as the UNDRIP : “To reclaim traditional systems by “building information understand the term sovereignty as Indian people in- governance capacity, enacting our own laws, entering terpret it one has to first understand, in the simplest of into data sharing and licence-to-use contracts, creating terms, the history of the settlement of this country and regional data centres and repatriating our data, First the Aboriginal/settler relations which evolved from the Nations are getting closer to exercising full jurisdiction first moment of settlement by Europeans” . over our information” . As sovereign nations, First Nations have the right The British Columbia First Nations Data Gover- (inherent and constitutionally-protected) to exercise nance Initiative (BCFNDGI), in their 2017 paper, “De- authority over their data and information. First Nations colonizing Data: Indigenous Data Sovereignty Primer,” are accountable to their membership for the use and identified the shift in Nation-to-Nation relationships management of community information. The concept and the importance of recognizing how Indigenous of data sovereignty “is linked with Indigenous peoples’ data has traditionally been handled and managed by right to maintain, control, protect and develop their Canada. They write, “It is equally important to recog-
FNIGC / First Nations data sovereignty in Canada 59 nize that nation states have traditionally handled and been consulted about what information should be col- managed Indigenous data in the following ways: lected, who should gather that information, who should 1. Methods and approaches used to gather, analyze maintain it, and who should have access to it” . and share data on Indigenous communities has Instead, “Governments gather administrative and other reinforced systemic oppression, barriers and un- data on First Nations often without their knowledge equal power relations. or consent and both they and researchers analyse, in- 2. Data on Indigenous communities has typically terpret and report on the data, often without consent, been collected and interpreted through a lens of approval, review or input by First Nations representa- inherent lack, with a focus on statistics that re- tives” . There are many instances of First Nations flect disadvantage and negative stereotyping. people’s data and knowledge being published by re- 3. Data on Indigenous communities collected by search teams without community approval or involve- nation state institutions has been of little use to ment in the analysis of the findings . Without First Indigenous communities, further distancing Na- Nations’ involvement in the development and use of tions from the information. the data, communities have become resistant to sharing 4. Data on Indigenous communities collected by the their information due to the mistrust in the data col- nation state government has been assumed to be lection process. Without their participation, the over- owned and therefore controlled by said govern- all quality of the data is questionable . This resis- ment; and, tance is a result of a history of exploitation and mis- use of data and research in First Nations that has led 5. With a lack of a meaningful Nation-to-Nation di- non-First Nations parties to “pathologize [First Na- alogue about data sovereignty . tions] and justify unnecessary government interven- In the 21st Century, data is certainly one of the tion” . Building trusting relationships when doing most sought-after resources. It has the potential to research involving First Nations is fundamental to its positively or negatively influence decision making, success and legitimacy because “when communities do policy, and social change, and ultimately to trans- not trust the organizations collecting the data or the form nations. For decades, governments and schol- data collectors themselves, and are not invested in the ars/researchers have been collecting, analyzing, and purpose of the data, it becomes very difficult to gar- consuming vast amounts of First Nations data under ner participation” . Furthermore, data on Indige- the premise of making informed decisions, being ac- nous communities has typically been collected and in- countable, and developing targeted policies and pro- terpreted through a deficit lens, with a focus on statis- grams. Although their justifications can often appear tics that reflect disadvantage and negative stereotyping. sound, strictly Western methods and approaches used Without a genuine and clearly defined relationship, have reinforced systemic oppression, barriers, and un- data collected and used is “subject to potential mis- equal power relations between Western society and interpretation by researchers with different paradigms First Nations. This has led to countless laws, poli- . . . [which] can be used to present communities nega- cies, and programs, created under the western world- tively without the context of historical trauma and In- views/perspectives that are culturally distorted, dis- digenous worldviews.” . criminatory, oppressive, and harmful to First Nations. Additional challenges to First Nations participation The Western research paradigm has generally seen in research include a lack of involvement throughout the majority of wealth, resources, and power held by the research processes; lack of engagement and rela- government authorities and academic institutions and tionship building; lack of access to capacity building “First Nations have been the subject of too much and/or training; insufficient or non-existent funding or irrelevant research, with the majority of research resources; misuse of information; lack of confidential- projects initiated by, paid for and carried out by non- ity; lack of informed consent; lack of transparency of Indigenous people from universities, government and benefits and risks; failure to reflect community prior- industry” . The resulting information and data have ities; research focuses that are not relevant to com- largely served the personal, professional, and/or corpo- munity; reports that sensationalize First Nations issues rate interests of non-First Nations scholars/researchers, and result in stigmatization; the commercialization of rather than ensuring that First Nations governments traditional knowledge; and a lack of control or access and communities benefited. to a community’s information or data. The 1996 Report of the Royal Commission on Abo- First Nations data, “when developed, gathered, and riginal Peoples noted that “Aboriginal people have not used correctly, provides First Nations with a way to
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