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Ethics of Aboriginal Research

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Greg Gareau

on 22 November 2012

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Transcript of Ethics of Aboriginal Research

The Earth That Supports Us: The Unseen World of Spirit World Ethics, Rules Protocols and Customs Individual
Behaviours Values, Deeply Held Beliefs About Good and Evil JAGGED WORLDVIEWS COLLIDING TRANSMISSION OF ABORIGINAL WORLDVIEW AN ABORIGINAL PERSPECTIVE ON ETHICS CODIFIED ETHICS ISSUES IN DEVISING ABORIGINAL ETHICAL REGIMES Ethics of Aboriginal Research By Marlene Brant Castellano Presented by: Alexis Lee Paul and Gregory Gareau References http://www.news.wisc.edu/newsphotos/nebula.html
http://www.krikk.com/details.php?image_id=38 Time Immemorial Community Language Family Ceremony Commissioned in 1992 by the National Aboriginal Health Organization Purpose Proposes a set of principles to assist in developing ethical codes for the conduct of research internal to the Aboriginal community or with external partners; To assist in developing an organizational position on research ethics. Limits Language, images, and perspectives are those of a Mohawk woman and academic of a certain generation. Readers from other cultures, particularly Métis and Inuit will need to translate to connect the author's words with their own world views and experiences. Paper Definitions Research: Actively intended to investigate, document, bring to light, analyze, or interpret matters in any domain; to create knowledge for the benefit of society or of particular groups.

Aboriginal: Refers to First Nations, Inuit, and Métis Peoples as referenced in the Canadian Constitution.

Aboriginal Research: research that touches the life and well being of Aboriginal Peoples. It may: involve Aboriginal Peoples and their communities directly; assemble data that describes or claims to describe Aboriginal Peoples and their heritage; affect the human and natural environment in which Aboriginal Peoples live.

Ethics: Rules of conduct that express and reinforce important social and cultural values of a society; formal and written, spoken, or simply understood by groups who subscribe to them. Explains the need for ground rules for Aboriginal ethics because it is not immediately evident for new research being conducted Need Barriers Aboriginal expectations diverge from past practice and resistance from academic research establishments is expected. November 20, 1945 to October 1, 1946 Nuremburg trials raise international concern over research ethics, out of which came The Nuremburg Code which was subsequently replaced by the Helsinki Declaration in 1964. Emphasizes informed consent and balance between risk to participants and potential benefit.
The Organization for Economic Co-operation and Development (OECD) outlined an influential set of principles for data protection. 1980
Dr. Clare Brant, the first Aboriginal Psychiatrist, wrote Native Ethics and Rules of Behaviour which used the language of ethics to illuminate powerful unspoken assumptions that guide behaviour among his Iroquoian, Cree, and Ojibway patients. 1990 Significant numbers of First Nations reserve communities decline to participate in the national Census and related Aboriginal Peoples Survey which sought data on disease and treatments statistics but was not the basis for planning to promote the health of the population. 1991 and 2001 Royal Commission on Aboriginal Peoples of which Marlene Brant Castellano was Co-Director of Research, brought about 80 Aboriginals who were involved in research together.
"If we have been researched to death, maybe it's time we started researching ourselves back to life." September, 1992 Formation of the Tri-Council Policy Statement 1st edition 1998 The Grand Council of the Mi'kmaq ratified a Mi'kmaw Ethics Watch that sets principles and guidelines for researchers conducting research with the Mi'kmaq Peoples. 1999 2000 The United Nations Commission on Human Rights publish The Report of the Seminar on the Draft Principles and Guidelines for the Protection of the Heritage of Indigenous People, the most comprehensive set of Aboriginal-specific guidelines. 2002 The Strategic Grants Directorate of the Social Sciences and Humanities Research Council distributed an open invitation to those interested in Aboriginal research to participate in a dialogue on establishing priorities and guidelines. In 2003 they sought nominees with Aboriginal research expertise to fill a position on the panel. 2003 The First Nations Statistical Institute is brought forward by the Minister of Indian Affairs in Parliament. In The Past... Aboriginal knowledge has always been informed by research, the purposeful gathering of information and the thoughtful distillation of meaning.

Research acquired a bad name because the purposes of research and meanings associated with it were alien to the people themselves and research was misguided and harmful. Aboriginals are now engaged in transforming Aboriginal research into an instrument for creating and disseminating knowledge that authentically represents Aboriginals and their understanding of the world.

There is an active discussion of research ethics going on now in government and in granting councils which is an opportunity for Aboriginal Peoples to engage in dialogue on how research can be adapted to achieve social benefit as they define it. Present Research In Canada If one was to do research in Canada and apply for funds, their project would have to be approved by the Tri-Council. Guided by the Tri-Council Policy Statement which is used by the major research granting councils: the Natural Sciences and Engineering Research Council (NSERC), Social Sciences and Humanities Research Council (SSHRC), and Canadian Institutes of Health Research (CIHR). TRI POLICY SHORTCOMINGS 1) Ethical guidelines are administered on a voluntary basis
2) Research proposals are reviewed for compliance with ethical guidelines but once approved, there is no provision for monitoring how the research is actually conducted.
3) Ethics committees focus on the procedures for getting informed consent but generally do not examine the ethical character of the research project itself.
4)There are no sanctions available to discipline researchers who violate guidelines beyond making complaints to universities or affiliated associations.
5)Research funded by individuals or corporations are not subject to publically approved ethical guidelines.
6) Advances in medical research has outpaced ethical development, for example genetic research.
7)The federal government is a major funding source for research but it relies on other agencies to safeguard the public interest. Even if ethical guidelines are made more consistent, up-to-date, and enforceable, there is a danger that Aboriginal Peoples will be neglected or be made subject of inappropriate regulation.
Refraining ethical codes needs to be highly context specific to ensure the social benefit also extends to the Aboriginal Peoples whose universe is being studied. Non-interference inhibits argument and advice giving and is consistent with the teachings based on non-intrusive modeling rather than direct instruction that attempts to shape the behaviour of the learner. There is freedom to grow and learn but also an acceptance of the risks and consequences of one's behaviour.

Traditional teachings use examples, stories and songs, ceremonies, and engagement with the natural world which is governed by laws of life. Elder Peter Waskahat: "We had our own teachings, our own education system teaching children that way of life was taught by the grandparents and extended families; they were taught how to view and respect the land and everything in Creation. Through that the young people were taught how to live, what the Creator's laws were, what were the natural laws, what were the First Nations' laws....the teachings revolved around a way of life that was based on their values." When Aboriginal Peoples speak about maintaining and revitalizing their cultures they are talking about restoring order to daily living in conformity with ancient and enduring values that affirm life. Some nations have codified their ethical systems The Iroquois Great Law of Peace teaches the importance of cultivating a good mind in order to live well and harmoniously in the world.

West Coast nations use potlaching as a public way of validating genealogies, family responsibilities, inheritance rights, and land tenure. Conception of View: Reality Aboriginal World views assume that to achieve social good, human action must be ethical, in a spiritual context, and within its physical and social situation.

Elders are the most knowledgeable about physical and spiritual reality, the teaching and practice of ceremonies, and the nuances of meaning in Aboriginal languages.

Transmitting Aboriginal world views is guided by the wisdom of Elders:
•Language, which carries the code of interpreting reality, is learned within the famiy and reinforced by the practices and values endorsed by the community.
•Public ceremonies and private rituals give shared expression to teachings which in turn become incorporated in the language of family and community relations.

Misguided policies sought to undermine the role of language and the influence of family, community, and ceremony in shaping individual and community life, as well as Aboriginal identity.

However, RCAP wrote, "Aboriginal cultures were vibrant and distinctive not only in the beginning but remain so today...a fundamentally different world view continues to exist and struggles for expression whenever Aboriginal Peoples come together."

Positive scientific thought assumes only observable phenomena matter.
Externally sponsored research has documented customs but missed the deeper significance, the metaphors, and the beliefs that are within those customs. Leroy Little Bear described the encounter of Aboriginal philosophies with positivist scientific thought. Leroy Little Bear: "The functions of Aboriginal values and customs is to maintain the relationships that hold creation together." The struggle has gone beyond survival and now extends to applying cultural ways in the management of lands and economic activity; the structures of governance; the provision of health, education, justice and other human services; and relations with the larger Canadian society and the world community.

The struggle is to live and thrive as peoples and nations while maintaining and expressing distinctive world views that contribute uniquely to the Canadian federation.

United Nations Working Group on Indigenous Populations, "Indigenous peoples have the right of self determination. By virtue of that right they freely determine their political status and freely pursue their economic, social, and cultural development."

Fundamental to exercising self-determination is the right of constructing knowledge in accordance of what is right and what is valuable. Aboriginal scholars are challenging western assumptions and methodologies of research.
In the world of Aboriginal knowledge, the rules of right behaviour are intimately related to who you are, the deep values you subscribe to, and you understanding of your place in the spiritual order of reality.
If ethics are to be searched for they are the most expressed in the lives of the most knowledgeable and honourable members of the community, Elders.
Rules derived from other ways of life in other communities will inevitably cause problems, although common understandings and interests can be negotiated.
However, if researchers and those researched have vastly different notions of what constitutes social benefit and how it is achieved, the research is unlikely to satisfy the needs and expectations of participants on both sides.
This is the ground on which Aboriginal Peoples stand on as they engage in dialogue about research ethics that will affect their lives. Governing Relationships
In Aboriginal knowledge systems, the boundary between material and spiritual realms and the boundaries between humans, animals, plants, and animals is permeable.

Scientific research assumes that the earth and the waters are inanimate or lifeless and because many Aboriginal societies depend on a healthy natural environment to meet their needs, industrial development that sacrifices environmental values directly infringes on Aboriginal well-being and human rights.

Therefore environmental research that will impact the physical environment or archival research that may perpetuate negative or inaccurate representations of Aboriginal Peoples must be subject to Aboriginal research ethics. 1) Should Aboriginal ethics be restricted to research on human subjects?
Elder Simon Lucas described the iner-dependent relationship between humans and natural elements, "The sea and its resources is the heart and soul of our people...The health of the ocean means healthy emotions...The health of the ocean means that my spiritual well-being is going to stay intact." 2) Balancing reductionist analysis and holistic vision Science uses a reductionist approach which reduces the scope of analysis to smaller bits of reality that can be analyzed with greater specialization and downplays the role of intuitive insight.

The science of ecology has emerged to include the many variables that interrupt cause and effect sequences and to some extent counters the dominance of reductionist research.

In contrast, Aboriginal science acknowledges the spirit of the plant, animal or the land, and the importance of relationships in supporting life.

Gregory Cahete, a Tewa educator writes: Native peoples...know the language of their places. In learning this language...Native people also come to know intimately the "nature" of the places they inhabit. Learning the language of a place...in the context of "homeland" is an underlying foundation of Native science." Aboriginal science synthesizes patterns perceived from multiple observations. For example, the teachings of the medicine wheel fosters the awareness that any event or phenomenon functions as part of a larger whole.

Therefore holistic awareness and highly focused analysis are complimentary, not contradictory.

Examples of the blend of these sciences are:

The Sandy Lake Health and Diabetes Project in northwetern Ontario which has brought together clinical treatment, community-based prevention strategies, and participation in genetic studies.

The Akwesasne Mohawk community which enlisted scientists from Cornell University to assist in verifying the nature and degree of pollution that was destroying the health of their crops and animals. 3) Having "A living, dialogical relationship with the world" This phrase is from Matt Battiste and James (Sa'ke'j) Youngblood Henderson's work, Protecting Indigenous Knowledge and Heritage

It encapsulates the Aboriginal ethic that all aspects of the world we know have life and spirit and that humans have an obligation to learn the rules of relating to the world with respect.

Exchanges take place within relationships that confirm that the relationship continues beyond the time and place of the exchange.
This means that knowledge is not a commodity that can be purchased and exploited at will.

Knowledge carries with it power and Elders may decline to have their knowledge recorded because they want to be assured that the seeker is compliant with the ethical obligations. Example, Aboriginal peoples helped many fur traders and whalers survive in harsh conditions, or treat scurvy and this knowledge was used to gain a foothold in North America.

Individual perspectives are respected but must be validated by community dialogue and reflection before they become collective knowledge.

Objective research that distances the informant and the investigator violates the Aboriginal ethics of reciprocal relationship and collective validation and produces distorted research of Aboriginal reality. 4) Who owns Aboriginal Knowledge? Section 6 of TCPS recommends: When research involves Aboriginal individuals, researchers and research ethics boards should consider the interests of the Aboriginal group.
This leaves the question of when individuals may be interviewed without regard to the group as a whole.

Darrell A. Posey and Graham Dutfield characterize violations of Indigenous Peoples' rights to derive equitable benefit from their traditional knowledge and illegitimate use of Aboriginal knowledge for pharmaceutical and other commercial usage as cultural and bio-piracy.
Collecting knowledge from persons not authorized by Aboriginal Peoples is akin to historical illegitimate land transfers or the purchase of sacred artifacts which violates community ethics on access.
Such transfers violate international norms on consent which state that persons must be competent and have the authority to give consent where others' interests are involved. 5) Getting Voluntary Consent In many cases, research in Aboriginal communities is initiated by agencies that provide Aboriginal Peoples with essential services and this represents a conflict of interest.

Aboriginals can feel coerced and manipulated when giving consent because they fear refusing consent may result in the loss of funding for essential services.

Aboriginal Peoples are also at a disadvantage in negotiations that could alter the research to give adequate recognition to community priorities and ethical approaches to knowledge creation.

Privacy of health data collected in the delivery of health services has become a major concern because of the difficulty of monitoring the secondary or tertiary purposes for which it is used.

The OECD developed standards that mean only relevant and accurate data should be collected for precise and limited purposes and that disclosure should be restricted to those original purposes.

Aboriginal Peoples worry that Census and population health data is not restricted under ethical rules or privacy legislation.

Thus Aboriginal people feel they have no control over assembled information that may be used for unauthorized surveillance or that may reinforce negative stereotypes. 6) Methodology and Validation Culturally different approaches to knowledge creation imply different methods of gathering and validating information.

Participatory research has received positive feedback from Aboriginal communities and the study of Elders' language is one example of how this method is applied.

Example, Treaty Elders of Saskatchewan was developed with the assistance of the Federation of Saskatchewan Indian Nations, with Elder helpers to assist with ceremonies and translations of contributions in First Nations languages, and with translations of Elders' words checked by the Elders themselves to verify accuracy.

The final text was published with confidence that it embodied a beginning theoretical framework grounded in the knowledge of Cree, Saulteaux, Dene, and Assiniboine participants.

Validating intercultural communication is labour-intensive, time-consuming, and expensive.

Example, citing sources was learned in high school and at first was very difficult but once the reasons for acknowledging the contributions of others was explained, it became accepted as proper protocol. 7) Challenges of Bicultural Research Aboriginal Peoples have always conducted research within their communities, it is how they survived in a changing environment.
In the 20th century, participation in the discourse of courts and governments required expertise in French and English.

Land claims relied heavily on new methods of research to prepare arguments and mobilize documentary evidence.

It is difficult to secure resources within the Aboriginal community to research issues that are priorities, even with ethical commitments to respect cultural perspectives.

•Traditional ethics and practices may be fragmented and their applicability to contemporary circumstances unclear.

•Privacy, secure storage and management, and access to information by outsiders are concerns.

•Mechanisms to preserve the character of Aboriginal communities and assemble data to address common needs is at an early stage of development.

•Research for long-term planning is overridden by urgent priorities of services in health, housing, and education, perpetuating the conditions that create the crisis.

•Aboriginal Peoples are ill-informed about their rights and there is mistrust based on historical events. 8) Encouraging Ethical Research Conflicts from opposing worldviews must be resolved to continue Aboriginal research which will address the need for information of environmental degradation, epidemic health threats, and culturally appropriate economic development.
With half of Aboriginals living in urban areas, developing and distributing ethical intercultural research methods to the public is essential. INITIATIVES TO DEVELOP CODES OF ETHICS FOR ABORIGINAL RESEARCH The United Nations Commission on Human Rights states that protection of Aboriginals "should be based broadly on the principle of self-determination, which includes the right of indigenous peoples to maintain and develop their own cultures and knowledge systems, and forms of social organization."

Example, The Kahnawake Schools Diabetes Prevention Project adopted the KSDPP Code of Research Ethics to guide collaboration between the Mohawk community of Kahnawake, community-based researchers, and academic institutions.

The University of Victoria has guidelines to be applied in any research that "has effects on or could potentially affect Indigenous People."

When Aboriginals endorse surveys regionally, you have the 1997 Canada-wide sample survey on health which had many positive results. Regional organizations administered the survey, were able to add relevant questions and responses were very high. However, control over the data was an issue.

Government agencies argue that the maximum social benefit of publicly-funded research requires open access to data.

When you attempt to maximize benefits you become objective which ignores the relationships involved in research and the trust under which information is given. Aboriginal populations are relatively small and maximizing benefits to society would involve the continuation of violating Aboriginal rights.
Charles Weijer identified five major themes when attempting balance the risks and benefits of research affecting Aboriginal communities: Consulatation with the community, informed consent from community leaders, community collaboration, access to data, community rights to modify reports.

When Aboriginals are not consulted with, you have such failings as The First Nations and Inuit Regional Longitudinal Health Survey (RHS). Funded by Health Canada to gather national data on First Nations and Inuit health, data collected varies from incomplete to non-existent. FROM GUIDELINES TO GOVERNANCE Proposed principles that would guide the development of appropriate ethical regimes:
1) Aboriginal Peoples have a right to create and share knowledge affecting their culture, identity, and well-being which is protected by the Canadian Constitution.
2) The Government of Canada has an obligation to protect Aboriginal rights in research activities and the appropriateness of safeguards must be endorsed by Aboriginal Peoples.
3)The Government of Canada's establishment of ethical standards should balance regulations the restrict infringement of Aboriginal rights and those that respect ethical codes originating from affected communities, including Métis communities.
4) Ethical regulation of research affecting Aboriginal Peoples should include protection for "all knowledge, languages, territories material objects, literacy or artistic creations...including objects and forms of expression which may be created or rediscovered in the future based upon their traditions."
5) "The federal government, in collaboration with Aboriginal peoples, [should] review its legislation on the protection of intellectual property to ensure that Aboriginal interests and perspectives, in particular collective interests, are adequately protected."
6)Development and implementation of ethical standards for Aboriginal research should be in the hands of Aboriginal Peoples.
7) The costs of community consultation, development of research plans, negotiation and implementation of ethical protocols, and skills transfer should be recognized in the budget formulas for research grants and project planning.
8) Responsibility for education of communities and research rests with Aboriginal communities and organizations, government funders, granting agencies, professional associations, research institutions, and individual researchers. CONCLUSION The language of self-government has obscured the reality that Aboriginal Peoples are struggling to re-establish ethical order in their communities and nations.
Aboriginal Peoples are digging deep into their traditional teachings, reviving their ceremonies, and working to conserve their languages to preserve their world view, however, not all Aboriginal Peoples hold traditional world views with the same degree of tenacity. Future Establishing and enforcing ethical practice in Aboriginal research will require a continuing commitment to implementing protective legislation, administrative infrastructurem and education of the many participants in research.
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