Nurse Researcher
Data ownership
A clash of paradigms? Western and indigenous views on health research involving Aboriginal peoples Cite this article as: Campbell TD (2014) A clash of paradigms? Western and indigenous views on health research involving aboriginal peoples. Nurse Researcher. 21, 6, 39-43. Date of submission: May 30 2013. Date of acceptance: October 7 2013. Correspondence to Theresa Diane Campbell [email protected] Theresa Diane Campbell PhD is an assistant professor at the University of Saskatchewan, Regina, Saskatchewan, Canada Peer review This article has been subject to double-blind review and checked using antiplagiarism software Author guidelines nr.rcnpublishing.com/ r/nr-author-guidelines
Abstract Aim To explore the issues of data management and data ownership with regard to health research conducted in aboriginal or indigenous populations in Canada. Background Research with aboriginal communities in Canada has often been conducted by researchers who had little or no understanding of the community in which the research was taking place. This led to ‘helicopter’ research, which benefitted the researcher but not the community. National aboriginal leadership developed the ownership, control, access, and possession (OCAP) principles, which outline how to manage research data regarding aboriginal people and to counteract disrespectful methodologies. However, these principles present their own set of challenges to those who would conduct research with aboriginal populations.
and discuss the OCAP principles, and present the Canadian Institute of Health Research’s guidelines for health research involving aboriginal people as a guide for those who want to carry out ethical and culturally competent research, do no harm and produce research that can benefit aboriginal peoples. Conclusion There are special considerations associated with conducting research with Aboriginal populations. The Assembly of First Nations wants researchers to use the Ownership, Control, Access and Possession (OCAP) principles with First Nations data. These principles are restrictive and need to be discussed with stakeholders before research is undertaken.
Review methods This is a methodology paper that reviews the issues of data ownership when conducting research with Aboriginal populations.
Implications for practice/research In Canada, it is imperative that researchers use the Canadian Institute of Health Research Guidelines for Health Research Involving Aboriginal People to ensure culturally sensitive and ethical conduct during the course of the research with Aboriginal populations. However, some communities may also want to use the OCAP principles and these principles will need to be taken into consideration when designing the study.
Discussion The authors explore indigenous and Western views of knowledge development, outline
Keywords Data ownership, data collection, data management, indigenous research, cultural guidelines
Data sources Documents from the Assembly of First Nations, the Government of Canada, Aboriginal writers and researchers, and Nursing theorists and researchers.
Conceptual definitions In this paper, the terms aboriginal and indigenous refer to those who are members of, or who are descendants of, North American tribal groups, including First Nations, Inuit and Métis people. First Nations people are those whose names appear on the Indian Registry maintained by the department © RCN PUBLISHING / NURSE RESEARCHER
of Indian and Northern Affairs Canada (Health Canada 2012).
Introduction Research is not a seamless order of operations but a complex series of steps, often with unexpected detours along the way. In Canadian healthcare research, there July 2014 | Volume 21| Number 6 39
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Nurse Researcher can be an added layer of complexity when research is conducted with aboriginal populations. Aboriginal people worldwide suffer highly disproportionate levels of mortality and morbidity compared to the rest of the population, which may expose them to disproportionate amounts of research. Historically, health researchers entering aboriginal communities were viewed as having a ‘helicopter’ approach, where they would conduct a study, then leave the area, with few results being shared with or directly benefitting the community (Taylor 2008, Moodie 2010). Of primary concern, as a direct result of this approach, is the growing level of distrust that many aboriginal people feel toward researchers who come from outside their communities. As a political response to research that was viewed as missing the perspectives of First Nations people, the Assembly of First Nations (AFN) developed the ownership, control, access and possession of data (OCAP) principles (Schnarch 2004). The purpose of this paper is to explore the issues of data management and ownership with regard to healthcare research conducted in aboriginal or indigenous populations. Within this framework, we will take a closer look at the apparent divide between the OCAP principles and traditional Western views of research, and their potential effects on the scientific community. Our view is that these principles may be problematic if they are intended to replace the traditional ideology of scientific inquiry as they have a restrictive orientation that limits research methodologies based on the study population instead of the research question. We will discuss the Canadian Institute of Health Research (CIHR)’s Guidelines For Health Research Involving Aboriginal People (CIHR 2007), an ethically and culturally sensitive framework that offers an alternate guide to research involving aboriginal populations.
(Polit and Tatano Beck 2008). When research is conducted in this manner, it can be developed into new knowledge or intellectual property and then shared with the broader scientific and public community. When conducting research in settings in which the merit of the scientific process is met with caution, uncertainty and distrust, as it is in many aboriginal communities (AFN 2009), research can become more complicated. There seems to be a clash of indigenous and Western worldviews surrounding research, as the reasons for conducting research can differ greatly. According to Smith (2005), the goal of research with aboriginal peoples is self-determination; from a Western perspective, the goals of research may vary from knowledge creation to policy development (Canadian Institute of Health Research 2007). Concerns about data management and data ownership can arise during research. According to the AFN (2009), First Nations people generally distrust scientific researchers, primarily due to the lack of respect afforded to First Nations individuals and communities who have participated in research. Aboriginal people are now calling for a greater say in how research concerning aboriginal issues is conducted and how the data will be used (Schnarch 2004, AFN 2009). The aims of this paper are: to explore the Western views on knowledge and knowledge development and ethical principles that need to be considered when working with aboriginal populations; to discuss contemporary indigenous views of knowledge and knowledge development, with an emphasis on OCAP; and to present options for designing and implementing data custodianship guidelines as per CIHR (2007), so that conflict over data is less likely to occur in future research.
Background
Western views of knowledge and knowledge development
Aboriginal people experience a disproportionate amount of poor health in relation to the rest of the Canadian population (Health Canada 2012). In First Nations populations, the rate of diabetes is three to five times higher and the rate of tuberculosis is eight to ten times higher than that of the general Canadian population (Health Canada 2013). Health research can offer new knowledge, possible solutions to health disparities and ‘may be the ultimate stimulus for constructive social change’ (Taylor 2008). However, ‘how’ this research is carried out becomes of primary importance. It is generally accepted that to attain scientific merit, health research must consist of controlled steps that are methodologically sound and conceptually coherent
From a Western perspective, knowledge is derived from a number of sources: tradition, authorities, doctrine, reason, common sense and science (Polifroni 2011). Scientific knowledge is derived from processes or methods that may be based in analytical or ‘continental’ philosophies. The analytic perspective is closely related to positivism and empiricism, and relies on the scientific method to determine the truth (Polifroni 2011). Continental methods are about ‘the relationships among people, ideas, meaning, and their historical connectedness’ (Polifroni 2011). Phenomenology, hermeneutics and post-structuralism are three examples of continental philosophies that aim to demonstrate connectedness between
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Data ownership phenomena. These philosophies exist in contrast to the ‘cause and effect’ outcomes that are prevalent in analytical methodologies. Despite their different approaches to the development of knowledge and approximation of reality, the two perspectives are considered scientific ways of knowing and include the following: the background to the study, a study design (methodology), sample and setting, data collection methods, data analysis, findings, discussion and conclusion (Lobiondo-Wood et al 2013).
Tri-council policy statement on ethical research The tri-council policy statement on ethical research (TCPS) (Canadian Institute of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada 2005) states that there are various scientific, social and political reasons for the design and implementation of research. These include the discovery and promotion of knowledge, to test and validate theory, to lead to a better understanding of human behaviour and to serve as a basis for policy. The TCPS also describes a number of ethical principles that need to be addressed before undertaking research. Those that particularly apply to research with aboriginal populations are justice and inclusiveness; the TCPS states that no segment of the population should be unfairly burdened with the harms of research. Particular obligations are imposed when dealing with those who may be considered vulnerable and unable to protect their own interests, to ensure that they are not exploited purely for the advancement of others’ knowledge. Individual groups that may benefit from advances in research should be neither neglected nor discriminated against. Given the high rates of morbidity in aboriginal populations, aboriginal people should expect to be included in research concerning diseases such as diabetes and tuberculosis and should expect to benefit from the results. However, the TCPS principles fall short of expectations of the AFN.
Indigenous views on knowledge and knowledge development As a people with a strong oral tradition, aboriginal peoples have used stories to pass on their traditional knowledge (Newhouse 2004). Various members of their communities determined ownership and dissemination of these stories (Newhouse 2004, Schnarch 2004). Those who held the stories were passing on knowledge to maintain their community’s cultural and spiritual identity as well as their physical safety (Newhouse 2004). © RCN PUBLISHING / NURSE RESEARCHER
According to Cajete (2000), indigenous people’s knowledge is an expression of their interrelationship with nature. Their scholarship does not engage the intellect alone but also the mind, spirit, soul and self or being (Newhouse 2004). Their philosophy brings with it a willingness to engage in other ways of knowing (Newhouse 2004). It does not reject the knowledge that has been gained by Western or European influences; however, ideas are considered and accepted or rejected on the basis of their usefulness. Indigenous people are ‘rightfully suspicious’ of others who want to obtain their knowledge, as it has been distorted and suppressed (Newhouse 2004, Schnarch 2004, Getty 2010). Indigenous philosophies consider life sacred and rooted to the earth (Cajete 2000). They call for an ‘ecosophy’ – a harmony between the ecosystem and philosophy – which is a different way of knowing and living than is practised by Western society. According to Newhouse (2004), indigenous philosophy is grounded in the spiritual and is more than just a collection of observations packed into a set of theories that tell us how things work. Aboriginal language also plays a central role in aboriginal epistemology: ‘The complementary modes of knowing in the tribal world form the essence of tribal epistemology, and have been continually transmitted through the oral tradition. Without aboriginal languages, the lessons and knowledge would be lost to the people and their way of life gravely affected’ (Battiste 1998). Cajete (2000) suggests to acquire indigenous knowledge, one could choose from the following sources: observation, experiment, meaning and understanding, objectivity, unity, models, causality, spirit, interpretation, explanation, authority, place, cosmology, humans, ceremony, elders, dreams and visions, and paths. From the perspective of AFN (2009), research is an implicitly political process carried out by nonaboriginal researchers and used as an instrument of oppression and colonialism. It has been suggested that ‘post-colonial theory is a strategy of Western researchers to maintain control over research related to indigenous peoples, while ignoring the concerns of aboriginal people and their ways of knowing’ (Getty 2010). The AFN is calling for more respectful indigenous methodologies to replace the disrespectful research practices used in the past and that ‘defensive protection of traditional knowledge will continue to be necessary until acceptable national and international intellectual property regimes emerge’ (AFN 2009). The AFN wants to build its own research capacity and has developed the OCAP principles to call attention to their need to be involved in research about themselves (Schnarch 2004). July 2014 | Volume 21| Number 6 41
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Nurse Researcher The OCAP principles According to the OCAP principles developed with the AFN, there is an inherent right for First Nations to govern First Nations data (Schnarch 2004). These principles have come to represent a broader spectrum of self-governance and they now direct First Nations processes over all First Nations data. The principles include the following: Ownership This describes the relationship of each nation to its cultural knowledge, data and information in all forms. The information is owned collectively by the nation, just as an individual owns his or her personal information. Control This reflects ‘the aspirations and inherent rights to regain control of all aspects of their lives’, including control of information. This control extends to all aspects of information management, including resources, policy development and implementation, review processes, and data management. Access This is the right to have access to information and data about oneself and one’s nation, wherever it is held: ‘First Nations’ communities and organisations have a right to manage and make decisions regarding access to their collective information.’ Possession This is a mechanism to assert and protect ownership. When First Nations data are in the possession of others, for example, government and academia, there is often little or no control over management of the data as a result of conflicting policy and legislation, such as the Privacy Act, Statistics Act, Archives Act and the Access to Information Act (Schnarch 2004). According to AFN (2009), the key aspect to understanding OCAP is that each First Nation and no one else determines compliance. Each First Nation community can interpret the principles differently to others and some communities may choose not to use the principles of OCAP. Schnarch (2004) and AFN (2009) asserted that each First Nation should be free to exert governance over its information in whatever ways work for it. Researchers can anticipate that each community ‘will have a different set of guidelines which must be respected and applied’ (AFN 2009). Ideally, the First Nation would fully manage data from collection and analysis to dissemination. These documents promote the use of narrative and participatory research (although they do not name them as such) as methods of conducting research in First Nations communities. To illustrate what OCAP might mean to an aboriginal community, Schnarch (2004) provided an 42 July 2014 | Volume 21 | Number 6
anecdote regarding different ways in which a research project regarding solvent abuse could be approached. An outside researcher planned a ‘careful, ethicallysensitive and scientifically-rigorous’ study that would yield results in approximately two years. As the community did not want to wait for the results, they planned an alternative strategy that was carried out in an afternoon. A small delegation of respected adults went into the school and had students point out those who ‘sniffed’. These students and their families were brought together for support, counselling and treatment. Schnarch pointed out that the home-grown strategy would be more relevant and useful than ‘a painstaking and complex methodology’. It is unlikely it would be funded and might not be considered research, but would be more valuable to the community as it would have made an impact on people’s lives.
Potential effect of OCAP on research From a Western perspective, the legitimacy of research outcomes is founded in the researchers’ expertise in the design and implementation of the research and their substantive knowledge, rather than the act of locating themselves in the community (Thorne and Varcoe 1998). With regard to methods of research, communitybased methods, such as participatory research and community-involvement, have shown promise when working with First Nations peoples (Schnarch 2004). However, with the focus on the participation of community members, the research method rather than the larger objective of the research intent can lead to a number of issues regarding what is studied and how (Thorne and Varcoe 1998). If partnership research is viewed as the only credible form of research, it may permit a representative appropriation of the more powerful members of the community over others (Thorne and Varcoe 1998). To work with indigenous populations, a researcher with either a Western or indigenous person’s perspective will need to take a number of issues into consideration. Much depends on the goal(s) of the research: if the goal is to find a quick and pragmatic solution to a community problem, the research may not fit the needs of the community; an ethical and culturally competent research process will be needed if the goals are related to providing a stimulus for social change to improve health outcomes for community members and knowledge development for publication in peer-reviewed journals.
CIHR guidelines For researchers interested in these goals, the ethics office of the CIHR and the Institute of Aboriginal © RCN PUBLISHING / NURSE RESEARCHER
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Data ownership People’s Health developed guidelines to assist researchers and institutions in ‘carrying out ethical and culturally competent research involving aboriginal people’ and that is in keeping with aboriginal values and tradition (CIHR 2007). The guidelines contribute to the TCPS process, which was established to revise the sections that address research involving aboriginal people. To be funded by the CIHR, researchers conducting research with aboriginal people will need to follow these guidelines. Other agencies or governments may impose other regulatory requirements (CIHR 2007). The intent of CIHR (2007) is to promote health through research that is congruent with aboriginal values and traditions yet considerate of aboriginal and Western scientific perspectives. It is aimed at promoting ethics reviews that aid rather than suppressing research and at making researchers aware of the need to balance collective and individual interests. It was also developed to ‘provide assistance and direction to researchers who want to do no harm, but also conduct health research that benefits aboriginal people’ (CIHR 2007). It outlines when the guidelines should be used, when they are recommended, and when they may constitute ‘good practice’ but are not required.
Data considerations CIHR (2007) also outlined how data must be managed when conducting research with aboriginal populations. These guidelines need to be negotiated and specified as part of research agreements with aboriginal populations. Co-ownership of data and samples
by researchers and communities is recommended; nevertheless, individuals retain the right to access data about themselves (CIHR 2007). With regard to collecting data, the guidelines suggest the following procedures take place: explanation of what information will be collected; explanation of how the information will be identified, stored, accessed and linked to other data; explanation of how long the information will be kept, where it will be kept and by whom; explanation of ownership; inclusion of aboriginal group members to collect the data; and encouragement of inclusion of aboriginal group members (CIHR 2007).
Conclusion There is a history of ‘helicopter’ research, in which researchers have dropped in to an aboriginal community, collected data and then left with no thought of the impact of the process on the community or communication to them of the research’s findings. This practice needs to be stopped. The OCAP principles are a political response to unethical research methods that have been carried out by academic and government researchers. However, OCAP is not an ideal solution as it restrictiveness may hinder research. The CIHR, working with representative aboriginal community members, has developed guidelines for collecting data and carrying out research with aboriginal people. It has taken into the consideration the differing worldviews, the harms previously committed and the need for good health data to improve health outcomes for aboriginal peoples.
Online archive For related information, visit our online archive of more than 7,000 articles and search using the keywords Conflict of interest None declared
References Assembly of First Nations (2009) Ethics in First Nations Research. www.afn.ca/uploads/files/ rp-research_ethics_final.pdf (Last accessed: June 6 2014.) Battiste M (1998) Enabling the autumn seed: toward a decolonized approach to aboriginal knowledge, language, and education. Canadian Journal of Native Education. 22, 1, 16-27. Cajete G (2000) Native Science: Natural Laws of Interdependence. Clear Light Publishers, Santa Fe NM. Canadian Institute of Health Research (2007) CIHR Guidelines for Health Research Involving Aboriginal People. www.cihr-irsc.gc.ca/e/29134. html (Last accessed: June 6 2014.)
Canadian Institute of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada (2005) Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. CIHR, NSERCC and SSHRCC, Ottawa ON. Getty G (2010) The journey between Western and indigenous research paradigms. Journal of Transcultural Nursing. 21, 1, 5-14. Health Canada (2012) First Nations and Inuit Health: Diseases and Health Conditions. www.hc-sc.gc.ca/fniah-spnia/diseases-maladies/ index-eng.php (Last accessed: June 6 2014.) LoBiondo-Wood G, Haber J, Cameron C (2013) Critical reading strategies: overview of the research process. In LoBiondo-Wood G, Haber, J, Cameron C, Singh M (Eds) Nursing Research in Canada: Methods Critical Appraisal and
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Utilization. Third Canadian edition. Elsevier, Toronto ON. Moodie S (2010) Power, rights, respect and data ownership in academic research with indigenous peoples. Environmental Research. 110, 881-820. Newhouse D (2004) Indigenous knowledge in a multicultural world. Native Studies Review. 15, 2, 139-154. Polifroni EC (2011) Philosophy of science: an introduction. In Butts JB, Rich KL (Eds) Philosophies and Theories for Advanced Practice Nursing. Jones and Bartlett Learning, Sudbury MA. Polit DF, Tatano Beck C (2008) Nursing Research: Generating and Assessing Evidence for Nursing Practice. Fourth edition. Lippincott Williams & Wilkins, Philadelphia PA.
Schnarch B (2004) Ownership, control, access, and possession (OCAP) or self-determination applied to research: a critical analysis of contemporary first nations research and some options for first nations communities. Journal of Aboriginal Health. 1, 1, 80-95. Smith L (2005) Decolonizing Methodologies: Research and Indigenous Peoples. First edition. Zed Books, London. Taylor DM (2008) Scientific Survey Research: Might It Be the Needed Stimulus For Constructive Change in Inuit Communities? tinyurl.com/ kvl829n (Last accessed: June 6 2014.) Thorne S, Varcoe C (1998) The tyranny of feminist methodology in women’s health research. Health Care for Women International. 19, 6, 481-493.
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Data ownership
A clash of paradigms? Western and indigenous views on health research involving Aboriginal peoples Cite this article as: Campbell TD (2014) A clash of paradigms? Western and indigenous views on health research involving aboriginal peoples. Nurse Researcher. 21, 6, 39-43. Date of submission: May 30 2013. Date of acceptance: October 7 2013. Correspondence to Theresa Diane Campbell [email protected] Theresa Diane Campbell PhD is an assistant professor at the University of Saskatchewan, Regina, Saskatchewan, Canada Peer review This article has been subject to double-blind review and checked using antiplagiarism software Author guidelines nr.rcnpublishing.com/ r/nr-author-guidelines
Abstract Aim To explore the issues of data management and data ownership with regard to health research conducted in aboriginal or indigenous populations in Canada. Background Research with aboriginal communities in Canada has often been conducted by researchers who had little or no understanding of the community in which the research was taking place. This led to ‘helicopter’ research, which benefitted the researcher but not the community. National aboriginal leadership developed the ownership, control, access, and possession (OCAP) principles, which outline how to manage research data regarding aboriginal people and to counteract disrespectful methodologies. However, these principles present their own set of challenges to those who would conduct research with aboriginal populations.
and discuss the OCAP principles, and present the Canadian Institute of Health Research’s guidelines for health research involving aboriginal people as a guide for those who want to carry out ethical and culturally competent research, do no harm and produce research that can benefit aboriginal peoples. Conclusion There are special considerations associated with conducting research with Aboriginal populations. The Assembly of First Nations wants researchers to use the Ownership, Control, Access and Possession (OCAP) principles with First Nations data. These principles are restrictive and need to be discussed with stakeholders before research is undertaken.
Review methods This is a methodology paper that reviews the issues of data ownership when conducting research with Aboriginal populations.
Implications for practice/research In Canada, it is imperative that researchers use the Canadian Institute of Health Research Guidelines for Health Research Involving Aboriginal People to ensure culturally sensitive and ethical conduct during the course of the research with Aboriginal populations. However, some communities may also want to use the OCAP principles and these principles will need to be taken into consideration when designing the study.
Discussion The authors explore indigenous and Western views of knowledge development, outline
Keywords Data ownership, data collection, data management, indigenous research, cultural guidelines
Data sources Documents from the Assembly of First Nations, the Government of Canada, Aboriginal writers and researchers, and Nursing theorists and researchers.
Conceptual definitions In this paper, the terms aboriginal and indigenous refer to those who are members of, or who are descendants of, North American tribal groups, including First Nations, Inuit and Métis people. First Nations people are those whose names appear on the Indian Registry maintained by the department © RCN PUBLISHING / NURSE RESEARCHER
of Indian and Northern Affairs Canada (Health Canada 2012).
Introduction Research is not a seamless order of operations but a complex series of steps, often with unexpected detours along the way. In Canadian healthcare research, there July 2014 | Volume 21| Number 6 39
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Nurse Researcher can be an added layer of complexity when research is conducted with aboriginal populations. Aboriginal people worldwide suffer highly disproportionate levels of mortality and morbidity compared to the rest of the population, which may expose them to disproportionate amounts of research. Historically, health researchers entering aboriginal communities were viewed as having a ‘helicopter’ approach, where they would conduct a study, then leave the area, with few results being shared with or directly benefitting the community (Taylor 2008, Moodie 2010). Of primary concern, as a direct result of this approach, is the growing level of distrust that many aboriginal people feel toward researchers who come from outside their communities. As a political response to research that was viewed as missing the perspectives of First Nations people, the Assembly of First Nations (AFN) developed the ownership, control, access and possession of data (OCAP) principles (Schnarch 2004). The purpose of this paper is to explore the issues of data management and ownership with regard to healthcare research conducted in aboriginal or indigenous populations. Within this framework, we will take a closer look at the apparent divide between the OCAP principles and traditional Western views of research, and their potential effects on the scientific community. Our view is that these principles may be problematic if they are intended to replace the traditional ideology of scientific inquiry as they have a restrictive orientation that limits research methodologies based on the study population instead of the research question. We will discuss the Canadian Institute of Health Research (CIHR)’s Guidelines For Health Research Involving Aboriginal People (CIHR 2007), an ethically and culturally sensitive framework that offers an alternate guide to research involving aboriginal populations.
(Polit and Tatano Beck 2008). When research is conducted in this manner, it can be developed into new knowledge or intellectual property and then shared with the broader scientific and public community. When conducting research in settings in which the merit of the scientific process is met with caution, uncertainty and distrust, as it is in many aboriginal communities (AFN 2009), research can become more complicated. There seems to be a clash of indigenous and Western worldviews surrounding research, as the reasons for conducting research can differ greatly. According to Smith (2005), the goal of research with aboriginal peoples is self-determination; from a Western perspective, the goals of research may vary from knowledge creation to policy development (Canadian Institute of Health Research 2007). Concerns about data management and data ownership can arise during research. According to the AFN (2009), First Nations people generally distrust scientific researchers, primarily due to the lack of respect afforded to First Nations individuals and communities who have participated in research. Aboriginal people are now calling for a greater say in how research concerning aboriginal issues is conducted and how the data will be used (Schnarch 2004, AFN 2009). The aims of this paper are: to explore the Western views on knowledge and knowledge development and ethical principles that need to be considered when working with aboriginal populations; to discuss contemporary indigenous views of knowledge and knowledge development, with an emphasis on OCAP; and to present options for designing and implementing data custodianship guidelines as per CIHR (2007), so that conflict over data is less likely to occur in future research.
Background
Western views of knowledge and knowledge development
Aboriginal people experience a disproportionate amount of poor health in relation to the rest of the Canadian population (Health Canada 2012). In First Nations populations, the rate of diabetes is three to five times higher and the rate of tuberculosis is eight to ten times higher than that of the general Canadian population (Health Canada 2013). Health research can offer new knowledge, possible solutions to health disparities and ‘may be the ultimate stimulus for constructive social change’ (Taylor 2008). However, ‘how’ this research is carried out becomes of primary importance. It is generally accepted that to attain scientific merit, health research must consist of controlled steps that are methodologically sound and conceptually coherent
From a Western perspective, knowledge is derived from a number of sources: tradition, authorities, doctrine, reason, common sense and science (Polifroni 2011). Scientific knowledge is derived from processes or methods that may be based in analytical or ‘continental’ philosophies. The analytic perspective is closely related to positivism and empiricism, and relies on the scientific method to determine the truth (Polifroni 2011). Continental methods are about ‘the relationships among people, ideas, meaning, and their historical connectedness’ (Polifroni 2011). Phenomenology, hermeneutics and post-structuralism are three examples of continental philosophies that aim to demonstrate connectedness between
40 July 2014 | Volume 21 | Number 6
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Data ownership phenomena. These philosophies exist in contrast to the ‘cause and effect’ outcomes that are prevalent in analytical methodologies. Despite their different approaches to the development of knowledge and approximation of reality, the two perspectives are considered scientific ways of knowing and include the following: the background to the study, a study design (methodology), sample and setting, data collection methods, data analysis, findings, discussion and conclusion (Lobiondo-Wood et al 2013).
Tri-council policy statement on ethical research The tri-council policy statement on ethical research (TCPS) (Canadian Institute of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada 2005) states that there are various scientific, social and political reasons for the design and implementation of research. These include the discovery and promotion of knowledge, to test and validate theory, to lead to a better understanding of human behaviour and to serve as a basis for policy. The TCPS also describes a number of ethical principles that need to be addressed before undertaking research. Those that particularly apply to research with aboriginal populations are justice and inclusiveness; the TCPS states that no segment of the population should be unfairly burdened with the harms of research. Particular obligations are imposed when dealing with those who may be considered vulnerable and unable to protect their own interests, to ensure that they are not exploited purely for the advancement of others’ knowledge. Individual groups that may benefit from advances in research should be neither neglected nor discriminated against. Given the high rates of morbidity in aboriginal populations, aboriginal people should expect to be included in research concerning diseases such as diabetes and tuberculosis and should expect to benefit from the results. However, the TCPS principles fall short of expectations of the AFN.
Indigenous views on knowledge and knowledge development As a people with a strong oral tradition, aboriginal peoples have used stories to pass on their traditional knowledge (Newhouse 2004). Various members of their communities determined ownership and dissemination of these stories (Newhouse 2004, Schnarch 2004). Those who held the stories were passing on knowledge to maintain their community’s cultural and spiritual identity as well as their physical safety (Newhouse 2004). © RCN PUBLISHING / NURSE RESEARCHER
According to Cajete (2000), indigenous people’s knowledge is an expression of their interrelationship with nature. Their scholarship does not engage the intellect alone but also the mind, spirit, soul and self or being (Newhouse 2004). Their philosophy brings with it a willingness to engage in other ways of knowing (Newhouse 2004). It does not reject the knowledge that has been gained by Western or European influences; however, ideas are considered and accepted or rejected on the basis of their usefulness. Indigenous people are ‘rightfully suspicious’ of others who want to obtain their knowledge, as it has been distorted and suppressed (Newhouse 2004, Schnarch 2004, Getty 2010). Indigenous philosophies consider life sacred and rooted to the earth (Cajete 2000). They call for an ‘ecosophy’ – a harmony between the ecosystem and philosophy – which is a different way of knowing and living than is practised by Western society. According to Newhouse (2004), indigenous philosophy is grounded in the spiritual and is more than just a collection of observations packed into a set of theories that tell us how things work. Aboriginal language also plays a central role in aboriginal epistemology: ‘The complementary modes of knowing in the tribal world form the essence of tribal epistemology, and have been continually transmitted through the oral tradition. Without aboriginal languages, the lessons and knowledge would be lost to the people and their way of life gravely affected’ (Battiste 1998). Cajete (2000) suggests to acquire indigenous knowledge, one could choose from the following sources: observation, experiment, meaning and understanding, objectivity, unity, models, causality, spirit, interpretation, explanation, authority, place, cosmology, humans, ceremony, elders, dreams and visions, and paths. From the perspective of AFN (2009), research is an implicitly political process carried out by nonaboriginal researchers and used as an instrument of oppression and colonialism. It has been suggested that ‘post-colonial theory is a strategy of Western researchers to maintain control over research related to indigenous peoples, while ignoring the concerns of aboriginal people and their ways of knowing’ (Getty 2010). The AFN is calling for more respectful indigenous methodologies to replace the disrespectful research practices used in the past and that ‘defensive protection of traditional knowledge will continue to be necessary until acceptable national and international intellectual property regimes emerge’ (AFN 2009). The AFN wants to build its own research capacity and has developed the OCAP principles to call attention to their need to be involved in research about themselves (Schnarch 2004). July 2014 | Volume 21| Number 6 41
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Nurse Researcher The OCAP principles According to the OCAP principles developed with the AFN, there is an inherent right for First Nations to govern First Nations data (Schnarch 2004). These principles have come to represent a broader spectrum of self-governance and they now direct First Nations processes over all First Nations data. The principles include the following: Ownership This describes the relationship of each nation to its cultural knowledge, data and information in all forms. The information is owned collectively by the nation, just as an individual owns his or her personal information. Control This reflects ‘the aspirations and inherent rights to regain control of all aspects of their lives’, including control of information. This control extends to all aspects of information management, including resources, policy development and implementation, review processes, and data management. Access This is the right to have access to information and data about oneself and one’s nation, wherever it is held: ‘First Nations’ communities and organisations have a right to manage and make decisions regarding access to their collective information.’ Possession This is a mechanism to assert and protect ownership. When First Nations data are in the possession of others, for example, government and academia, there is often little or no control over management of the data as a result of conflicting policy and legislation, such as the Privacy Act, Statistics Act, Archives Act and the Access to Information Act (Schnarch 2004). According to AFN (2009), the key aspect to understanding OCAP is that each First Nation and no one else determines compliance. Each First Nation community can interpret the principles differently to others and some communities may choose not to use the principles of OCAP. Schnarch (2004) and AFN (2009) asserted that each First Nation should be free to exert governance over its information in whatever ways work for it. Researchers can anticipate that each community ‘will have a different set of guidelines which must be respected and applied’ (AFN 2009). Ideally, the First Nation would fully manage data from collection and analysis to dissemination. These documents promote the use of narrative and participatory research (although they do not name them as such) as methods of conducting research in First Nations communities. To illustrate what OCAP might mean to an aboriginal community, Schnarch (2004) provided an 42 July 2014 | Volume 21 | Number 6
anecdote regarding different ways in which a research project regarding solvent abuse could be approached. An outside researcher planned a ‘careful, ethicallysensitive and scientifically-rigorous’ study that would yield results in approximately two years. As the community did not want to wait for the results, they planned an alternative strategy that was carried out in an afternoon. A small delegation of respected adults went into the school and had students point out those who ‘sniffed’. These students and their families were brought together for support, counselling and treatment. Schnarch pointed out that the home-grown strategy would be more relevant and useful than ‘a painstaking and complex methodology’. It is unlikely it would be funded and might not be considered research, but would be more valuable to the community as it would have made an impact on people’s lives.
Potential effect of OCAP on research From a Western perspective, the legitimacy of research outcomes is founded in the researchers’ expertise in the design and implementation of the research and their substantive knowledge, rather than the act of locating themselves in the community (Thorne and Varcoe 1998). With regard to methods of research, communitybased methods, such as participatory research and community-involvement, have shown promise when working with First Nations peoples (Schnarch 2004). However, with the focus on the participation of community members, the research method rather than the larger objective of the research intent can lead to a number of issues regarding what is studied and how (Thorne and Varcoe 1998). If partnership research is viewed as the only credible form of research, it may permit a representative appropriation of the more powerful members of the community over others (Thorne and Varcoe 1998). To work with indigenous populations, a researcher with either a Western or indigenous person’s perspective will need to take a number of issues into consideration. Much depends on the goal(s) of the research: if the goal is to find a quick and pragmatic solution to a community problem, the research may not fit the needs of the community; an ethical and culturally competent research process will be needed if the goals are related to providing a stimulus for social change to improve health outcomes for community members and knowledge development for publication in peer-reviewed journals.
CIHR guidelines For researchers interested in these goals, the ethics office of the CIHR and the Institute of Aboriginal © RCN PUBLISHING / NURSE RESEARCHER
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Data ownership People’s Health developed guidelines to assist researchers and institutions in ‘carrying out ethical and culturally competent research involving aboriginal people’ and that is in keeping with aboriginal values and tradition (CIHR 2007). The guidelines contribute to the TCPS process, which was established to revise the sections that address research involving aboriginal people. To be funded by the CIHR, researchers conducting research with aboriginal people will need to follow these guidelines. Other agencies or governments may impose other regulatory requirements (CIHR 2007). The intent of CIHR (2007) is to promote health through research that is congruent with aboriginal values and traditions yet considerate of aboriginal and Western scientific perspectives. It is aimed at promoting ethics reviews that aid rather than suppressing research and at making researchers aware of the need to balance collective and individual interests. It was also developed to ‘provide assistance and direction to researchers who want to do no harm, but also conduct health research that benefits aboriginal people’ (CIHR 2007). It outlines when the guidelines should be used, when they are recommended, and when they may constitute ‘good practice’ but are not required.
Data considerations CIHR (2007) also outlined how data must be managed when conducting research with aboriginal populations. These guidelines need to be negotiated and specified as part of research agreements with aboriginal populations. Co-ownership of data and samples
by researchers and communities is recommended; nevertheless, individuals retain the right to access data about themselves (CIHR 2007). With regard to collecting data, the guidelines suggest the following procedures take place: explanation of what information will be collected; explanation of how the information will be identified, stored, accessed and linked to other data; explanation of how long the information will be kept, where it will be kept and by whom; explanation of ownership; inclusion of aboriginal group members to collect the data; and encouragement of inclusion of aboriginal group members (CIHR 2007).
Conclusion There is a history of ‘helicopter’ research, in which researchers have dropped in to an aboriginal community, collected data and then left with no thought of the impact of the process on the community or communication to them of the research’s findings. This practice needs to be stopped. The OCAP principles are a political response to unethical research methods that have been carried out by academic and government researchers. However, OCAP is not an ideal solution as it restrictiveness may hinder research. The CIHR, working with representative aboriginal community members, has developed guidelines for collecting data and carrying out research with aboriginal people. It has taken into the consideration the differing worldviews, the harms previously committed and the need for good health data to improve health outcomes for aboriginal peoples.
Online archive For related information, visit our online archive of more than 7,000 articles and search using the keywords Conflict of interest None declared
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Utilization. Third Canadian edition. Elsevier, Toronto ON. Moodie S (2010) Power, rights, respect and data ownership in academic research with indigenous peoples. Environmental Research. 110, 881-820. Newhouse D (2004) Indigenous knowledge in a multicultural world. Native Studies Review. 15, 2, 139-154. Polifroni EC (2011) Philosophy of science: an introduction. In Butts JB, Rich KL (Eds) Philosophies and Theories for Advanced Practice Nursing. Jones and Bartlett Learning, Sudbury MA. Polit DF, Tatano Beck C (2008) Nursing Research: Generating and Assessing Evidence for Nursing Practice. Fourth edition. Lippincott Williams & Wilkins, Philadelphia PA.
Schnarch B (2004) Ownership, control, access, and possession (OCAP) or self-determination applied to research: a critical analysis of contemporary first nations research and some options for first nations communities. Journal of Aboriginal Health. 1, 1, 80-95. Smith L (2005) Decolonizing Methodologies: Research and Indigenous Peoples. First edition. Zed Books, London. Taylor DM (2008) Scientific Survey Research: Might It Be the Needed Stimulus For Constructive Change in Inuit Communities? tinyurl.com/ kvl829n (Last accessed: June 6 2014.) Thorne S, Varcoe C (1998) The tyranny of feminist methodology in women’s health research. Health Care for Women International. 19, 6, 481-493.
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