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TCPS:
Section 6. Research Involving Aboriginal Peoples (PDF, 30 KB)
A. Introduction
B. Good Practices
During the drafting of this Policy Statement, suggestions
were made to create a section dealing with research involving Aboriginal
Peoples. The Agencies, however, have not held sufficient discussions with
representatives of the affected peoples or groups, or with the various
organizations or researchers involved. The Agencies have therefore decided
that it is not yet appropriate to establish policies in this area. The
text of Section 6, which builds on the extensive literature on research
involving Aboriginal Peoples, is intended to serve as a starting point
for such discussions.
There is growing recognition that some research involving Aboriginal individuals
may also involve the communities or groups to which they belong. The Agencies
affirm that in developing ethical standards and practices, Aboriginal
Peoples have rights and interests that deserve recognition and respect
by the research community. This section thus has three aims: to assist
researchers and REBs in determining which projects might involve research
on such groups; to illustrate ethical issues and conduct for such research;
and to indicate good practices that researchers should consider.
Guidance on these issues comes from at least two sources. The first is
the ethical principles, standards and procedures articulated throughout
this Policy. Thus, for example, ethics review should be proportionate
to the risks of potential harm. As well, informed consent and the concepts
of harm, benefits and confidentiality should be informed by the perspective
of the participant group.
For the expertise essential to effective ethics review, REBs may need
to involve academic or community members from representative groups, or
advisory committees drawn from relevant communities (see Article 3.4(c)).
Such approaches and the principles are consistent with the work of SSHRC some two decades ago.
The second source of ethical guidance comes from the specific additional
provisions developed in Canada and in other countries for research involving
Aboriginal Peoples. Beginning in Australia in 1986, research agencies
and Aboriginal Peoples have set out guidelines for the conduct of research
in Aboriginal communities. These guidelines do not replace ethical standards
for the conduct of research on individuals; they seek to suggest additional
requirements to ensure that the rights and interests of the community
as a whole are respected. International,
Australian,
Canadian (see below) and American
guidelines are currently available. The high degree of agreement and consensus
among these guidelines is remarkable, perhaps reflecting commonalities
in the experience of these communities and the sharing of existing guidelines
among communities.
Three documents are especially relevant to research on Aboriginal Peoples
in Canada. They were prepared by the Association of Canadian Universities
for Northern Studies,
the Royal Commission on Aboriginal Peoples
and the Inuit Circumpolar Conference. Researchers and REBs considering
research involving Aboriginal communities should be familiar with the
relevant documents. All three documents agree on the following requirements
for research involving Aboriginal communities.
Research may involve Aboriginal communities when it focuses on the community,
its subgroups or individuals as members. The research may seek information
on the characteristic beliefs, values, social structures or other features
by which members identify themselves as group members. Alternatively,
the group may be involved in the conduct, direction, sponsorship or implementation
of the research. A general principle is that the obligation to respect
human dignity in research involving Aboriginal groups gives rise to both
special considerations and to basic ethical duties regarding ethics review,
informed consent, confidentiality, conflict of interest and inclusion
(see Sections 1-5). This principle is not intended to preclude critical
inquiry and research, or research that may come to negative conclusions;
rather it seeks to advance accurate, informed and ethical research.
In Canada and elsewhere, Aboriginal Peoples have distinctive perspectives
and understandings embodied in their cultures and histories. This Policy
Statement recognizes the international consensus that has developed over
recent decades that Aboriginal Peoples have a unique interest in ensuring
accurate and informed research concerning their heritage, customs and
community.
Research involving Aboriginal communities may raise difficult ethical
issues, sometimes novel and sometimes old. As indicated in the Ethics
Framework described in this Policy, for example, research that is premised
on respect for human dignity entails high obligations to individuals and
groups. Indeed, there are historical reasons why Indigenous or Aboriginal
Peoples may legitimately feel apprehensive about the activities of researchers.
In many cases, research has been conducted in respectful ways and has
contributed to the well-being of Aboriginal communities. In others, Aboriginal
Peoples have not been treated with a high degree of respect by researchers.
Inaccurate or insensitive research has caused stigmatization. On occasion,
the cultural property and human remains of Indigenous Peoples have been
expropriated by researchers for permanent exhibition or storage in institutes,
or offered for sale. Researchers have sometimes treated groups merely
as sources of data, and have occasionally endangered dissident Indigenous
Peoples by unwittingly acting as information-gatherers for repressive
regimes. Such conduct has harmed the participant communities and spoiled
future research opportunities.
Other aspects of research involving Aboriginal Peoples present ethical
challenges. Since researchers may belong to a different culture, for example,
debates may arise because of different definitions of public and private
life. Notions of property will sometimes differ between the researcher,
sponsors and the community. Language differences may impede clear communication
and understanding that is instrumental to the informed consent process.
A researcher may also be confronted by ethical dilemmas because of competing
interests among different sections of the community.
For reasons such as these, when research involves Aboriginal individuals,
researchers and REBs should consider the interests of the Aboriginal group,
when any of the following considerations applies:
- Property or private information belonging to the group as a whole
is studied or used;
- Leaders of the group are involved in the identification of potential
participants;
- The research is designed to analyze or describe characteristics of
the group; or
- Individuals are selected to speak on behalf of, or otherwise represent,
the group.
The considerations above outline the proposed situations in which REBs should
review the need for involving the community in research involving Aboriginal
Peoples. Item (a) includes cultural properties
as understood by the Aboriginal community in question and may include human
tissue (Section 10). Item (b) covers research where the group is asked to
assist in recruiting its members, or to give official approval and permit
access to their property. Together, items (c) and (d) would include research
in which members are interviewed as spokespersons for the group as a whole.
The central issue for discussion is when it is legitimate for researchers
to interview individuals in their own right as individuals, without regard
to the interests of the group as a whole and without seeking permission
from any group authority or spokesperson or, conversely, when the approval
of the community as a whole should be required.
Researchers and REBs involved with Aboriginal communities should consider
the following "good practices," which have been drawn from the documents
referred to above:
- To respect the culture, traditions and knowledge of the Aboriginal
group;
- To conceptualize and conduct research with Aboriginal group as a partnership;
- To consult members of the group who have relevant expertise;
- To involve the group in the design of the project;
- To examine how the research may be shaped to address the needs and
concerns of the group;
- To make best efforts to ensure that the emphasis of the research,
and the ways chosen to conduct it, respect the many viewpoints of different
segments of the group in question;
- To provide the group with information respecting the following:
- Protection of the Aboriginal group's cultural estate and other
property;
- The availability of a preliminary report for comment;
- The potential employment by researchers of members of the community
appropriate and without prejudice;
- Researchers' willingness to cooperate with community institutions;
- Researchers' willingness to deposit data, working papers and related
materials in an agreed-upon repository.
- To acknowledge in the publication of the research results the various
viewpoints of the community on the topics researched; and
- To afford the community an opportunity to react and respond to the
research findings before the completion of the final report, in the
final report or even in all relevant publications (see Section 2 on
information disclosure).
Aboriginal Peoples may wish to react to research findings. It is inappropriate
for researchers to dismiss matters of disagreement with the group without
giving such matters due consideration. If disagreement persists, researchers
should afford the group an opportunity to make its views known, or they
should accurately report any disagreement about the interpretation of the
data in their reports or publications.
Medical
Research Council of Canada, Guidelines on Research Involving Human Subjects.
Ottawa, 1987, pp 27–28. [Back]
Social
Sciences and Humanities Research Council of Canada, Ethics Guidelines
for Research with Human Subjects. Ottawa, 1977, p.1–2, (affirming, as
regards collective rights, the right to be fully informed about the nature
and purpose of the research to enable the informed choice of the group;
the right to assurance that privacy will not be invaded and that any information
disclosed will remain confidential; the right of living members of a society
regarding the entry of "outsiders" to examine their burial grounds or cultural
property, or to exhibit and dispose of these objects). [Back]
Inuit
Circumpolar Conference, Principles and Elements for a Comprehensive Arctic
Policy. Alaska, Greenland, Canada, 1992; Council for International Organizations
of Medical Sciences, International Guidelines for Ethical Review of Epidemiological
Studies. Geneva, 1991. [Back]
National
Health and Medical Research Council of Australia, Guidelines of Ethical
Matters in Aboriginal and Torres Strait Islander Health Research. Canberra, 1991. [Back]
American
Anthropological Association, Statement on Ethics: Principles of Professional
Responsibility, Adopted by the Council of the American Anthropological
Association, May 1971; American Public Health Association Task Force, National
Arctic Health Science Policy. Washington, D.C., 1984; American Indian
Law Center, Model Tribal Research Code. Albuquerque, 1994; and U.S. Interagency
Arctic Research Policy Committee, "Principles for the Conduct of Research
in the Arctic". Arctic Research of the United States. Spring 1995, 9:
56–57. [Back]
Association
of Canadian Universities for Northern Studies, Ethical Principles for
the Conduct of Research in the North. Ottawa, 1982, reprinted
1988. [Back]
Royal
Commission on Aboriginal Peoples, Appendix B: Ethical Guidelines for
Research. Ottawa, 1993. [Back]
See,
e.g., UNESCO, Convention on the Means of Prohibiting and Preventing the Illicit Import, Export and Transfer of Ownership of Cultural Property. Paris, 1970.
[Back]
See,
e.g., American Anthropological Association, Statement on Ethics. 1991;
American Indian Law Center, Inc., Model Tribal Research Code. 1994, 2nd ed.; Board of the Swiss Academy of Humanities and Social Sciences
and of the Swiss-Liechtenstein Foundation for Archaeological Research Abroad, Principles for Partnership in Cross-Cultural Human Sciences Research
with a Particular View to Archaeology. 1994; Canadian Archaeological
Association, Statement of Principles for Ethical Conduct Pertaining to
Aboriginal Peoples. 1996; Association of Canadian Universities of Northern
Studies, Ethical Principles for the Conduct of Research in the North. 1997. [Back]
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