TOOLS

Best Practices

The instruments identified in Canada address a wide variety of themes and issues which may arise in the course of a research project.

Analysis of the corpus of more than 120 ethical instruments developed in Canada since 1992 has enabled us to identify 26 recurring themes. This list is not exhaustive and can be supplemented according to the needs and interests of the individuals and groups involved.

For each of the themes identified, several approaches are mobilized within the instruments. Among these approaches, it is possible to identify best practices. These can be identified through four indicators of equitable research that we have identified from an analysis of the literature in this field: transparency, community participation, hybridization of exchanges and sharing of decision-making powers.

Project definition and consent phase

  • Involvement of communities and their members in the development of the research project
  • Maintaining consent during Projects
  • The evolution of project parameters
  • Right to withdraw consent
  • The future of the data in case of withdrawal of participants
  • Use of languages

Collection, Data Analysis and Preparation of Results Stage

  • Participation in the data collection and analysis phase
  • Employment and training
  • Secondary Uses
  • Data transfer to third parties
  • Respect for confidentiality
  • Data and results submission
  • Rights of the participants with regard to the material submitted
  • Inclusion of divergent views
  • Approval of data/results
  • Use of languages

Dissemination and valorization of results

  • Restitution of collected data
  • Restitution of results
  • Adaptation of the data and results restitution
  • Use of languages
  • Acknowledgement of the participants’ contributions
  • Rights over data collected during the research project
  • Sharing of rights associated with the results and benefits of a project

Transversal Topics

  • Monitoring mechanisms during projects
  • Mechanisms for resolving disputes during the course of the project
  • Recognition of Indigenous frameworks and standards
  • Mechanisms for resolving conflicts between Indigenous and academic standards

What are the pillars of an equitable relationship?

In the context of equitable research, Aboriginal people are seen as partners who share an original and complementary perspective to that of scientific researchers. Traditional knowledge holders have powers that enable them to control the circulation of their knowledge during the different phases of research projects. For the communities and holders concerned, this implies a power to decide on their participation in a project and to have decision-making powers equivalent to those of researchers.

The characteristics of such an approach are transparency, community participation, hybridization of exchanges and sharing of decision-making powers.

TRANSPARENCY

Aboriginal communities and their members are kept as fully informed as possible throughout the projects so they can make informed decisions.

PARTICIPATION

The participation of communities during the various research phases allows them to become involved and to monitor the progress of the project. It is also an opportunity to develop new skills.

HYBRIDIZATION OF EXCHANGES

Hybridization of exchanges means implementation of approaches aimed at strengthening mutual understanding between researchers and communities. For example, by informing communities in the language of their choice or by submitting reports or publications in forms negotiated with the communities and adapted to their needs.

Shared decision-making authority: In collaborative projects with Aboriginal partners, Aboriginal partners must be able to participate in decision-making with the same authority as researchers. This includes the right to define the scope of use of their knowledge. For example, they must also have the right to review and decide on publications resulting from a project and on the possibilities of commercialization (in particular the filing of a patent). In short, these decision-making powers must allow Aboriginal participants to determine the conditions under which their knowledge will be used and shared outside the Aboriginal group.

PHASE 1
Definition of the research project and collection of participants’ consent

Description

The participation of communities and their members in the development of research projects deals with the role accorded to Indigenous Peoples in defining the parameters of research projects (e.g. definition of research questions, methodology, etc.) as well as the rules for taking their opinions and expectations into account.

Why is the topic worth considering?

The participation of communities and their members in defining the parameters of a research project can play a fundamental role in the recognition and protection of their interests.

The involvement of communities and their members can therefore help foster better relations between researchers and Indigenous People and improve the conduct of a project and its outcomes. This is so even though the participation of communities and their members may imply for researchers sometimes radical changes in practices (for example, obtaining approval of their research project by a partner community before submitting a research project).

The need for changes in practices implied by the participation of communities in the definition of research projects may be less and less ignored by researchers, since it is one of the keys to the acceptance and success of a project.

Example of a good practice

“The terms of the research as well as the research question and methodology will be designed in consultation with, and having due consideration for, the expertise of the Indigenous individuals or groups who will form part of the research.”

–University of Victoria Faculty of Human and Social Development, Protocols and Principles for conducting Research in an Indigenous Context, 2003.

Comments

This approach provides for the participation of Indigenous communities and their members in the definition of the parameters of a research project, but also for the consideration of their points of view.

The communities and their members are brought to participate in the development of the research project and also have decision-making powers that allow them to influence the characteristics of the project. This is a manifestation of a sharing of authority between researchers and communities.

The former do not unilaterally impose their conditions and do not reserve the right to enforce them even if they are informed of different points of view on the part of the communities and their members.

In this sense, under this type of approach, researchers cannot disregard community advice and comments, which tends towards a relationship of equals within the project. It is also an approach that can foster greater hybridization of projects through the integration of different points of view.

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Description

This theme refers to the rules and mechanisms for confirming the consent of participants throughout a research project. Is this a continuous process or rather a one-time event localized in time (generally at the beginning of the project)?

Why is the topic worth considering?

Maintaining the consent of participants during the course of projects is a very important issue since projects can last several years and are generally made up of multiple stages during which various unexpected events can occur.

The rules and mechanisms for confirming the consent of participants throughout the projects are therefore likely to help establish and maintain transparency in the exchanges between the actors involved in a research project.

Example of a good practice

“The consent of the people involved in the research, where such people are identifiable, will be sought and confirmed before the research commences as well as on an ongoing basis.”

–Yukon College, Protocols and Principles for conductions research with Yukon First Nations, 2013.

Comments

According to this approach, continuous information is provided during the course of the project so the participants are aware of the project’s evolution over time. This is fundamental in order to avoid, for example, initially unintended uses that might prove unacceptable to some parties. These provisions may contribute to the emergence of a more equal relationship between researchers and Aboriginal people.

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Description

This theme refers to the rules and mechanisms applicable in the event that the parameters of a research project change during the course of a project. Should participants be informed of these potential changes? Do they have to approve them before their implementation?

Why is the topic worth considering?

A research project can often last several years and is usually made up of multiple stages during which various unexpected events may occur.

The rules and mechanisms applicable when the parameters of a research project can be modified are therefore likely to contribute to maintaining the transparency of the exchanges between the actors involved and to guarantee a sharing of decision-making powers.

Example of a good practice

“If the researcher wishes to make substantial changes in his or her research protocol after receiving approval from the Akwesasne Task Force on the Environment, he or she must submit a summary of the proposed modifications to the Research Advisory Committee. Modifications in the data collection procedures must be approved by the Research Advisory Committee and must not be implemented until the researcher receives written approval to make the changes from the Chairperson of the Akwesasne Task Force on the environment.”

–The Kanhiakehaka Nation, Good Mind Research Protocol, 1996.

Comments

The obligation to inform the participants and to obtain a new consent from them if the parameters of the research project change is a principle that promotes transparency in the relations between the parties, but also a sharing of decision-making powers.

Indeed, according to this principle, researchers cannot unilaterally modify the characteristics and parameters of a project (which can be very frequent, especially with projects running over several years). In this way, researchers cannot impose their interests and constraints, especially those that may arise during the course of the project. It is also a principle that helps prevent attempts to conceal certain objectives or aspects of a project in order to obtain initial consent and subsequently modify the project.

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Description

This theme refers to the rules and mechanisms applicable to the withdrawal of participants during a research project. Can participants revoke their consent and withdraw from a research project? If so, under what condition(s)?

Why is the topic worth considering?

The right to withdraw recognizes the power of project participants to end the relationship. The existence of rules and mechanisms regarding the right to withdraw of participants during a research project is therefore likely to contribute to the establishment of a sharing of decision-making powers among participants in a research project.

Examples of good practices

“Participants and the Community have the right to withdraw from the project at any time provided that both parties are fully aware of the consequences.”

–University of Saskatchewan, Principles and Guidelines for Ethical Research with Indigenous Peoples, 2008.

“The Parties agree that the Participating Cree First Nations individually and collectively have a right to withdraw their participation in (and to refuse that their Confidential Information or the Iiyyiu Plants be used for) one or several phases of the Research Project (…).The reasons for the decision must be described in writing to the other Parties.”

–Université de Montréal, le Centre hospitalier de l’Université de Montréal, McGill University, University of Ottawa et le Cree Board of Health and Social Services of James Bay, et The Cree Nation of Mistissini (corporation), the Whapmagoostui First Nation (corporation), Final Research Agreement for a Project on Hyiyiu Anti-Diabetic Plant Medicines, 2009.

Comments

In this example, the withdrawal can be exercised at any time by the participants. There is a sharing of authority between the communities and the researchers, since the researchers explicitly recognize the possibility for communities to unilaterally end the collaboration.

In some cases, participants who wish to withdraw may be asked to explain their choice. This approach may contribute to greater transparency between the parties. However, this explanation should not be an obligation for the participants so as not to create an additional obstacle to their withdrawal if they are not able to express the reasons for their decision beyond discomfort with the project.

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Description

This topic refers to the rules applicable to data provided by a participant who has decided to withdraw from a research project. In this case the withdrawal entails the termination of the collaborative relationship with the researcher.

This refers to data collected in the course of the project and before it has been published. Indeed, once the data has been made public, the issue of data withdrawal is no longer relevant.

Why is the topic worth considering?

The rules and mechanisms applicable to the management of the data collected following withdrawal of a participant can contribute to the establishment of sharing of decision-making powers in favor of the participants.

Example of a good practice

“Withdrawal: An individual participant has the right to withdraw from the research process at any point. If this occurs, all information already collected on the individual should be destroyed or returned to the individual.”

–First Nation Centre, Considerations and Templates for Ethical Research Practices, 2007.

Comments

Under this approach, participants appear to be particularly protected since they do not have to express their views on the withdrawal of the data or request it to take place automatically. This seems logical since it can be assumed that the withdrawal of an individual is generally connected to the data they have provided during a project or to the data they are asked to provide and the use that can be made of it. It would therefore seem odd a priori that researchers should be able to retain the data.

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Description

This theme refers to the rules and mechanisms applicable in linguistic issues during the presentation of a research project and the collection of participants’ consent.

Why is the topic worth considering?

Rules and mechanisms for language use can contribute to and reflect greater hybridization in the relationship between researchers and Indigenous communities.

The use of Indigenous languages can also contribute to greater transparency in the relationships between stakeholders by making the information exchanged potentially more understandable, particularly for participants who are more comfortable with an Indigenous language.

Example of a good practice

“All research partners shall provide informed consent of the research processes choices in their own language (written and oral); including: explanations of usefulness of the study, potential benefits and possible harmful effects on the individuals, groups and the environment.”

–Mi’gmawei Mawiomi Secretariat, Wesgijinua’luet research guidelines, 2008.

Comments

Under this approach, participants must be able to receive information in the language of their choice, including Indigenous languages. Offering participants a choice is interesting in that they may not choose to be informed in an Indigenous language, particularly because of language erosion.

Nevertheless, we would like to emphasize that we believe there is a difference between giving participants a choice and an approach that would consist of proposing that participants use Indigenous languages from the outset, while ultimately giving them a choice. Indeed, it seems to us that faced with a choice between two languages that are a priori available and mobilizable, some people may not necessarily feel comfortable asking for the use of their language knowing that in some cases the researchers do not master them or because it would entail additional costs.

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PHASE 2
Collection, Data Analysis and Preparation of Results Stage

Description

This theme refers to the recognized methods of participation which benefit participants during a research project, particularly with regard to data analysis and results preparation.

Are the participants able to contribute to the interpretation of the data?
Do they participate in the drafting of the final results?
Or are they involved in the management of the research project?

Why is the topic worth considering?

Beyond informing communities and their members, several authors stress the importance of their participation throughout the research projects: “It is simply not enough just to inform Indigenous and local communities of ethnobiological research activities but instead it is necessary to include them in all aspects of the research process, including project design, implementation, reporting, and evaluation” (Gilmore et Eshbaugh, 2011). This participation is likely to increase the transparency of the exchanges but also to make the project potentially more relevant for the participants by integrating their interests and expertise. These are rules and mechanisms that can also promote fairer and more egalitarian relations between researchers and participants.

Examples of good practices

Participation in data collection: “First Nation community members should conduct the collection of information at the community level”

–The Council of Yukon First Nations, Traditional Knowledge Research Guidelines A Guide for Researchers in the Yukon, 2000.

Participation in the interpretation of results: “The ________________ First Nation must be involved as a full partner in all aspects of the research. Feedback, input, consultation and participation in the analysis, interpretation and communications should always characterize the research partnership.”

–First Nation Centre, Considerations and Templates for Ethical Research Practices, 2007.

Participation in the direction of research: “The research must be led by a member of the Indigenous community, although non native academics are invited to participate as supporting researchers or co-leads.”

–Blue Quills First Nations College, Research Ethics Policy, 2004.

Comments

The first approach cited provides for participation during the data collection phase from participants. This hands-on participation can contribute to better monitoring by community members of the information that is collected. In this sense, this type of participation is likely to increase transparency in the conduct of the research.

The second approach has similar characteristics while focusing on the data interpretation phase. This approach is likely to increase transparency in the formulation of the research project’s conclusions and allow communities and their members to contribute to the formulation of these conclusions. In this sense, this type of provision illustrates a trend towards greater equality in the relationship between researchers and communities.

The third approach is the most integrative in that the communities and their members are invited to participate in the direction of the research. In this scenario, they potentially have the power to intervene in various areas (data collection, interpretation, etc.) and to influence the directions of the research project. This approach can thus contribute to a shared authority between researchers and communities, since the latter is associated with the governing bodies of a research project. This approach also promotes better monitoring of projects by communities and thus allows for greater transparency.

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Description

This theme refers to the applicable rules for employment of community members involved in a research project, as well as to measures aimed at the training of members of the communities in the field of scientific research.

Does the project provide for the employment of community members, for example as interpreters or as researchers involved in data collection and analysis?

Are participants trained during the course of the project, for example, to be able to conduct their own research afterwards?

Why is the topic worth considering?

Training and employment can help build the capacity of communities and their members: “Aboriginal people are no longer willing to ‘get educated’ without the results being used to improve their quality of life. They also desire to be actively involved in projects, with a view to capacity building” (Hugo Asselin et Suzy Basile, 2012).

The participation of communities and their members enables them to eventually develop their own research projects: “Community participation reassures members and allows them to develop research expertise. Capacity building does not only involve learning tools or directly applying research results. It is also for Aboriginal peoples to learn how to do research themselves, to fulfill their own goals and to reduce the need to rely on external researchers” (Hugo Asselin et Suzy Basile, 2012).

Examples of good practices

Employment: “Research studies or development projects that seek to utilize Traditional Knowledge shall offer Dehcho community members training and/or employment opportunities, in order that members can participate in the research.”

–Deh Cho First Nation, Traditional Knowledge Research Protocol, 2005.

Learning new skills:  “All research partners should attempt to impart new skills into the community, e.g. data collection, whenever possible, advisable or desirable by the community.”

–Mi’kmaw Ethics Watch, Research Principles and Protocols, 2000.

Research training: “Research should support the transfer of skills to members of the ________________ First Nation and increase the capacity of the community to manage its own research.”

–First Nation Centre, Considerations and Templates for Ethical Research Practices, 2007.

Comments

The various approaches cited are intended to encourage active participation of community members in research projects. This participation will likely allow for better monitoring of the projects and thus greater transparency of the operations that are carried out.

In the last approach mentioned (providing training in defining and conducting research), the emphasis is on considering communities and their members as true research partners, capable of carrying out their own projects. In this sense, this type of provision illustrates a commitment towards more egalitarian relations between researchers and communities. It is about including communities and their members in the conduct of research so that it is conducted by a diverse body of individuals and perspectives, aside from exclusively academic researchers.

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Description

Once consent has been obtained and the data collected, the data is analyzed to prepare results. This theme refers to the uses authorized during the analysis of the collected data.

Are these uses limited to those initially authorized or, on the contrary, can they be modified if new applications appear possible during the course of the project?

If so, under what conditions?

Why is the topic worth considering?

The framework of the fields or domains for which the use of knowledge is authorized, is fundamental to avoid abuses during or at the end of a project.

There are two situations where the problem of secondary use is particularly acute. In the first case, the research team initially collects data from a community, and later in the project, discovers there are other potential applications to which the Aboriginal holders have not consented. In the second case, a team that did not participate in the data collection benefits from the results of the team that carried out the initial project. This second team discovers a new application that was not consented to by the knowledge holders.

The monitoring of uses relating to traditional knowledge is therefore a means for communities and their members to prevent misuse and various types of damage. In this sense, addressing the issue of secondary uses can help to promote the sharing of decision-making powers between researchers and participants, but also transparency of exchanges between the parties.

Example of a good practice

“This consent ends with the user to whom the consent was given and with the completion of the purpose for which the consent was requested. This consent cannot be passed on to successors. It does not extend to other uses and purposes.”

–Gitanyow Nation, Gitanyow Policy Manual for Management of Cultural Heritage Resources, 2009.

Comments

In this case, researchers cannot unilaterally decide to use the data collected for purposes other than those for which consent has been provided. Consequently, researchers cannot conceal their purposes from participants in order to obtain access to the data (see access on more advantageous terms). We are thinking in particular of researchers who would expose an a priori non-commercial use of traditional knowledge, but knowing full well that their research could lead to commercial uses. Similarly, if promising secondary uses are incidentally discovered during the course of a project, researchers are obliged to return to the communities to obtain fresh consent if they wish to exploit these potential uses.

This approach is therefore likely to promote transparency between communities and researchers by requiring researchers to refrain from pursuing secondary uses or, if necessary, to obtain new consent. In this sense, the possibility of an evolution in the position of communities within research projects is recognized; it is only a matter of preserving the participants’ freedom of informed choice. It is also a manifestation of power sharing between communities and researchers, since researchers cannot impose new research directions beyond those authorized at the time of initial access (or those which are renegotiated with the consent of participants).

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Description

The rules regarding transfer of data during a research project refer to the rights and limits on the disclosure of data communicated by participants to third parties. Third parties are those individuals or groups who are not part of the research team or whose participation in the project is unknown to the participants.

Why is the topic worth considering?

As with secondary use rights and limits, the topic of knowledge transfer to third parties can empower participants to control the circulation of their knowledge. It is indeed possible to imagine cases in which a first user would serve as a nominee or intermediary for a third party to whom the users would not necessarily have granted access to the knowledge.

Example of a good practice

“Access by anyone other than the project research team to the information that was shared by yourself will require your permission.”

– Nancy Elizabeth MacPherson, Traditional knowledge for health, thèse de maitrise, University of British Columbia, 2009 non publiée.

Comments

Prohibiting or regulating the transfer of knowledge to third parties constitutes principles and mechanisms which promote a sharing of authority between researchers and Aboriginal participants, but also serve as an indicator of transparency. Indeed, the former cannot use knowledge as they see fit.

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Description

This theme refers to the protection of participants’ privacy. In particular, the protection of their anonymity if they so wish. Indeed, in some cases participants may decide that their names should not be disclosed in publications or associated with the data and results.

Why is the topic worth considering?

Respect for confidentiality is a fundamental issue for communities and participants because of the risks and consequences that may be associated with the disclosure of personal information for participants: “Sharing of information can also sometimes be dangerous for the person who provides the data – for example, if the knowledge itself is sensitive, or if it reveals controversial views about other factions or individuals in the community” (Laird et al., 2002) .

Privacy rules and mechanisms can contribute to empowering communities and their members with regard to the disclosure of their personal information.

Example of a good practice

“Confidentiality will be maintained using a coding system, unless a participant gives written request to be publicly noted.”

–Boston Bar First Nation (NLAKA’PAMUX) and the University Of British Columbia Institute for Aboriginal Health, Boston Bar First Nation (NLAKA’PAMUX) and the University Of British Columbia Institute for Aboriginal Health, 2009.

Comments

Under this approach, confidentiality must be protected unless participants do not wish for it to be. In this sense, confidentiality is the minimal standard, and it must be explicitly addressed. As in the first case, this is a preventive approach to the protection of confidentiality which causes researchers to have no choice but to respect confidentiality, and only the participants can reverse this obligation by explicitly indicating otherwise to the researchers. This results in a genuine sharing of decision-making powers between researchers and participants.

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Description

The submission of data and/or results refers to the rules and mechanisms governing the communication of collected data and final results to project participants prior to any public dissemination. The rights and powers, if any, associated with the submission of data and results are discussed in another section.

Why is the topic worth considering?

The publication of data is of fundamental importance to researchers who are held to increasingly higher quantitative performance targets (Laird et al., 2002).

The publication of results is very often described as a contribution to knowledge that is necessarily positive and beneficial to humanity as a whole (Burelli et Aubertin, 2017). This view is open to criticism, particularly in the field of the study and valorization of biodiversity resources and associated traditional knowledge (Laird and al., 2002 ; Menzies, 2001).

The publication of data and results related to a research project involving indigenous participants and their knowledge may indeed present risks for the latter (Gilmore and Eshbaugh, 2011). Several authors emphasize the extent to which the publication of knowledge can contribute to its appropriation, particularly by third parties (Bannister, 2000 ; Vodden et Bannister, 2008). For participants, these inherent risks associated with certain visions of scientific research, justify the evolution of practices and rules regarding publication (Laird and al., 2002).

Example of a good practice

“The summary documents and working documents shall be reviewed by the community, or its designated body, to determine the reliability and validity of the information submitted.”

–Deh Cho First Nation, Traditional Knowledge Research Protocol, 2005.

“Researchers have an obligation to provide the Elders Group, the Ktunaxa Treaty Council and the KKTC with an opportunity to review the research results and provide comments before the final product is completed.”

–Ktunaxa Nation, Ktunaxa Nation’s Code of Ethics for Research, 1998.

Comments

The identified approaches promote transparency between researchers and participants regarding the data that has been collected and, where appropriate, the interpretations that have been made (the results). These approaches also promote greater intelligibility between participants and researchers by verifying the data and results to ensure that the research corresponds to what participants wanted to express and share. In the context of the study and enhancement of traditional knowledge, these are fundamental strategies for avoiding the disclosure of confidential data, avoiding misinterpretation and/or offending community values.

However, the approaches identified are not equivalent. Indeed, the submission of collected data in the sense of raw information obtained from participants seems to us to be a minimal approach. It allows participants to ensure that the information collected by the researchers is accurate and not confidential. This approach does not, however, make it possible to control the way in which this data will be interpreted by the researchers and the ways in which these data will be contextualized.

This is a perspective that is possible under the second approach, which provides for the submission of results. The second approach involves the integration of the data collected. In this sense, the second approach would allow for potentially wider control and oversight by the participants. It should be noted, however, that this control comes later and while the researchers have almost final products. The control at this stage of the accuracy of the data collected and their non-confidentiality is more complex for participants and researchers. Indeed, the former are confronted with results, and therefore with data that have a priori been analyzed and that may involve a multitude of participants. For the researchers, the participants’ comments can have a very important impact on the results and their presentation.

The best approach would be the one involving the submission of both the data collected from each participant, and then the results consolidating and presenting this data. These two steps could be integrated into the research process without constituting insurmountable constraints.

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Description

Beyond the submission of data and results prior to publication, the question that arises concerns the rights of communities and their members with regard to the material submitted. Three main types of approaches are possible: 1- approval of the data or results; 2- the right to modify and withdraw data; 3- the inclusion of divergent points of view.

Why is the topic worth considering?

According to the authors, the rights associated with the submission of data and/or results pose two problems from the point of view of actors in academic circles. On the one hand, they may conflict with the requirements and objectives of publication of results that weigh on researchers (Nagy, 2011). On the other, and more importantly, they imply that communities and their members may refuse to publish certain results or request modifications (Nagy, 2011).

Adam Gaudry stressed the risks of disclosing elements of the intangible cultural heritage of communities and their members at all costs (Gaudry, 2015). He argues that the advancement of knowledge and, at the same time, the exercise of academic freedom by the researcher in some cases may be pursued to the detriment of community interests (Gaudry, 2015).

The rights associated with the submission of data and/or results may contribute to the recognition of decision-making powers in favour of participants in a research project. In particular, these rights allow us to appreciate the sharing of authority between researchers and Aboriginal people.

Examples of good practices

Approbation: “Final research reports shall be approved by the respective Dehcho community before being released to any external agency.”

–Deh Cho First Nation, Traditional Knowledge Research Protocol, 2005.

Right to modify: The Report shall be distributed in a timely manner to the relevant Mi’gmaq political organizations. The MTI shall have a reasonable period of time to review and comment on the report and propose reasonable amendments before it is forwarded to the Proponent.

–Mi’gmaq Sagamaq Mawiomi, Consent form New Brunswick Mi’gmaq Indigenous Knowledge Study (NBMIKS) Process Guide, 2016.

Inclusion of divergent views: “If RC and/or FNs do not agree with interpretation, the article can be published, although RC and FN have right to include statement.”

–Université de Montréal, le Centre hospitalier de l’Université de Montréal, McGill University, University of Ottawa et le Cree Board of Health and Social Services of James Bay, et The Cree Nation of Mistissini (corporation), the Whapmagoostui First Nation (corporation), Final Research Agreement for a Project on Hyiyiu Anti-Diabetic Plant Medicines, 2009.

“In the event of a continuing dispute between researchers and the community over the interpretation of data, researchers shall either (a) provide the community with an opportunity to make its views known, or (b) accurately reflect in their reports and publications any disagreement over interpretation”.

–Trois Conseils de recherche canadiens, Énoncé de politique des trois conseils (2ème édition), 2010.

Comments

The approval of data or results is an expression of shared decision-making authority between Aboriginal people and researchers. Indeed, through this approach, researchers cannot publish the data and results without prior approval from the participants.
With respect to the right to modify data, in the approach presented, participants have unequivocal decision-making powers with respect to the publication of data and results. Researchers cannot impose their choices and interests. Participants are defined here as equal partners with the researchers and may object to publication. There is therefore a sharing of authority between researchers and Aboriginal people.

The integration of divergent points of view allows communities and their members to express disagreements or differing interpretations. This type of measure therefore allows communities and their members to participate in the preparation and drafting of conclusions and results. It enables them to make their voices heard. This is an original practice from the point of view of scientific research since researchers do not claim a monopoly on the interpretation of results. In this respect, it is a form of shared authority and a manifestation of hybridization of the researchers’ methods. It is an approach that differs from a right to approve or modify conclusions, and which aims to prevent blockages by preferring as an alternative the presentation of a plurality of points of view. Under this approach, researchers are not obliged to modify their conclusions in the event of disagreements with communities. They can therefore potentially impose their conclusions. However, these conclusions must then be accompanied by comments.

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Description

The use of languages during the collection phase of a research project refers to the rules applicable to the use of the vernacular languages of the participants in the collection of the data to be analyzed and published.

Why is the topic worth considering?

The use of participants’ vernacular languages during this phase of research can contribute to a greater hybridization of relationships between researchers and Aboriginal communities and their members.

Examples of good practices

“Always have an interpreter with Elders who are more comfortable in their language.”

–Noojmowin Teg Health Centre, Guidelines for Ethical Aboriginal Research – Ethical Research Guidelines for Community-Based Health Research in First Nations in the Manitoulin, 2003.

“You may choose to be interviewed alone or you may choose to invite one or more people to participate or just be present with you or to help translate if you wish to speak in the Squamish language.”

– Leigh Joseph, Finding Our Roots: Ethnoecological Restoration of lhásem (Fritillaria camschatcensis (L.) Ker-Gawl), an Iconic Plant Food in the Squamish River Estuary, thèse de maitrise, University of Victoria, 2012 non publiée

Comments

The two approaches that we have identified contribute, in our view, to a greater synergy of the relationship between researchers and participants. Indeed, the use of Aboriginal languages is likely to strengthen mutual understanding between the actors of the research project. According to the first approach, the use of Aboriginal languages is the norm since an interpreter must be present. In this sense, it is proposed that participants express themselves in the Aboriginal language of their choice. The second approach is very similar to the first, since the researchers must allow participants to express themselves in the language of their choice. Note that in some cases, it is indicated that translation costs will be covered by the researchers. This is an additional commitment towards a greater hybridization of researcher-Aboriginal relations.

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PHASE 3
Dissemination and valorisation of results

Description

Data restitution refers to the sharing of information and data that has been collected from project participants. In the context of this return, the question of confidentiality arises in particular when this data is not only returned to the participant, but also to institutions representing the communities. There is also the question of how the data and information will be shared.

Why is the topic worth considering?

The return of collected data can contribute to the establishment of greater transparency in the relationship between participants and researchers. Addressing this theme can also lead to the synergy of relationships based on the ways in which data is shared with participants.

Example of a good practice

“That once the research is complete, the data will be disseminated to individual participants and participating communities in such a manner that is comprehensible and useful to those individuals.”

–Nuu-chah-nulth Tribal Council Research Ethics Committee, Protocols and principles for conducting research in a Nuu-Chah-Nulth context, 2008.

Comments

Under this approach, researchers must take active steps to return the data. This type of approach promotes transparency between researchers and participants regarding the data that has been collected. This is very important for communities and their members so that they can monitor the use of their data. Nevertheless, participants retain the right to waive confidentiality. They therefore retain a large degree of control over the data they have provided.

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Description

Restitution of results refers to the sharing of all the final products of a research project, whether they are articles, videos or any other product. In the context of this dissemination, questions arise regarding the ways in which the results will be shared.

Why is the topic worth considering?

Restitution of results can contribute to greater transparency in the relationship between participants and researchers. Addressing this theme can also lead to the hybridization of relationships based on the ways in which results are shared with participants (Gilmore et Eshbaugh, 2011).

Example of a good practice

“Researchers must provide one copy of the final product of the research project to: a) the Elders Group; b) the Ktunaxa Treaty Council; and c) the KKTC.”

–Ktunaxa Nation, Ktunaxa Nation’s Code of Ethics for Research, 1998.

Comments

According to this approach, the results are returned automatically. This is a provision that promotes transparency between researchers and participants. As equal partners in the projects, it seems legitimate that participants should be able to obtain a copy of the results. This restitution is also fundamental in order to ensure a follow-up regarding possible future uses.

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Description

Adaptation of the data and results restitution refers to the applicable rules and mechanisms governing the forms in which the products resulting from a research project will be returned to the participants.

Why is the topic worth considering?

The return of data and results does not guarantee that the results will be understood and useful for communities, hence the importance of adapting the returns to be intelligible to lay persons: “All too often, communities and local research institutions share their time and knowledge with visiting researchers, who in turn do not return their results in ways that are relevant to the needs of local groups or conservation efforts – or in a language that can be understood” (Laird and al., 2002). Adaptation of returns can take a wide variety of forms (Laird and al., 2002 ; Gilmore and Eshbaugh, 2011).

In this sense, adapting returns can contribute to a greater hybridization of relationships between researchers and communities and an approach that can potentially promote greater transparency.

Examples of good practices

There are several possible ways of adapting the data and results restitution:

Clarity: “Research findings will be presented to the community in a language and format that is clear and comprehensible to community members.”

–First Nations Centre, National Aboriginal Health Organization, Template for a Collaborative Research Agreement, 2007.

Conciseness: “A Community has a right to expect clear, concise, useful and accessible research results as a reciprocal benefit for allowing researchers intimate access to their personal and Community knowledge.”

–University of Saskatchewan, Principles and Guidelines for Ethical Research with Indigenous Peoples, 2008.

Plain language: “All research studies containing Traditional Knowledge shall be summarized in a plain language report (English and Slavey, as determined by the community) and or on audiotape (in Slavey, as determined by the community).”

–Deh Cho First Nation, Traditional Knowledge Research Protocol, 2005.

Oral or written restitution: “Where appropriate, the research findings will be presented in oral, written and visual forms in both Indigenous and non-Indigenous publications and forum.”

–University of Victoria Faculty of Human and Social Development, Protocols and Principles for conducting Research in an Indigenous Context, 2003.

Usefulness: “That once the research is complete, the data will be disseminated to individual participants and participating communities in such a manner that is comprehensible and useful to those individuals.”

–Nuu-chah-nulth Tribal Council Research Ethics Committee, Protocols and principles for conducting research in a Nuu-Chah-Nulth context, 2008.

As deemed appropriate by the participants: “Researchers must transmit the results of their studies to the communities and individuals involved in the project in a manner deemed acceptable by the Innu Nation.”

–Innu Nation, Principes de recherche de l’Innu Nation, 1996.

Comments

According to the approaches cited, it is not just a matter of returning the results, but of doing so in a way that is suitable for the communities and their members. This is an invitation to a greater hybridization of restitution practices for researchers who should not simply return results as they are deemed useful in their reference universes. They must also take into account the reference universe of Aboriginal communities. Researchers are therefore encouraged to adapt their approaches in order to account for Aboriginal world views. This approach is also likely to increase the transparency of exchanges by making the results potentially more understandable to the communities.

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Description

This theme refers to the language rules governing dissemination of the products resulting from a research project to the participants, and also to the public. For example, should the information collected during the project and the results be disseminated in the language of the participants?

Why is the topic worth considering?

The treatment of linguistic aspects during the dissemination phase of the results is likely to promote greater transparency of the research work and the hybridization of the reports.

Examples of a good practices

Use of Indigenous language for data restitution: “Mi’gmaq language – if interviews are conducted in Mi’gmaq, information should be given back in Mi’gmaq.”

–Mi’gmawei Mawiomi Secretariat, Wesgijinua’luet research guidelines, 2008.

Use of Indigenous language for results sharing: “In some instances, translation into Aboriginal languages will be necessary to ensure that those affected by the research have access to the results.”

–Ph.D. Program in Native Studies (University of Trent), Ethics Guidelines for Ph.D. Program in Native Studies + Guidelines for Community-Based Research, 2004.

Comments

The provision of reports in the language desired by the participants is an approach that hybridizes the relationships between researchers and communities which can lead to better mutual understanding. Consequently, these approaches also promote greater transparency. With respect to the provision of summaries in Aboriginal languages and not the final documents, this is probably a minimal standard to ensure the comfort and inclusion of community members who may not necessarily speak the language of the researchers, understand it poorly, or do not wish to mobilize it.

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Description

This theme refers to the rules and mechanisms governing the recognition of participants’ contribution in a research project. Should the identity of participants be mentioned in the final results? If so, should the participants be associated as co-authors?

Why is the topic worth considering?

Recognition of the contribution of Aboriginal participants is essential both as a means of protection against the misuse of knowledge, but also as a moral obligation towards the holders: “This would help ensure that full credit is given to Indigenous individuals and their communities, a level of recognition consistent with academic citation and credit. It would also facilitate contact with communities wishing to be consulted if further use of the data or resources is sought” (Bannister and Barrett, 2006).

Examples of good practices

Automatic recognition of participants’ contributions: “The sources of TK information must be referenced in any work being conducted. (…) All information gathered shall be properly noted and credit shall be given to the holder of the TK and the First Nation from which it came.”

–The Council of Yukon First Nations, Traditional Knowledge Research Guidelines A Guide for Researchers in the Yukon, 2000.

Automatic recognition of participants’ contributions subject to confidentiality safeguards: “I understand that I may be acknowledged as a participant/contributor to the final reports, tapes and collections and that copies of all tapes will be deposited to an appropriate Ahousaht repository, with one copy to myself. I, therefore, understand that unless I request it, my anonymity will not be protected and that all documentation will not be confidential.”

Craig Juliet, “Nature was the provider” : traditional Ecological knowledge and inventory of culturally significant plants and habitats in the Atleo River watershed, Ahousaht Territory, Clayoquot sound, thèse de maitrise, University of Victoria, 1998 non publiée.

Recognition of co-authorship: “Any publication using TK must acknowledge TK holders and their contribution and include TK holders as joint authors where appropriate.”

–The First Nations in BC Knowledge Network, A Template for the Development of Traditional Knowledge Policies, 2010.

Comments

The first approach (whereby the contribution of participants must be recognized) suggests a trend towards equal relationships between researchers and Aboriginal people to the extent that the contribution of Aboriginal people must be recognized on the same basis as that of researchers.

Under the second approach cited, recognition of the contribution of participants is the applicable principle. Only respect for confidentiality can displace this principle because confidentiality is an additional protection for participants who would not wish their names to be mentioned.

The possibility of co-authorship recognition for Aboriginal participants is a manifestation of the hybridization of practices and the recognition of Aboriginal contributions in the same manner as that of scientists. This possibility thus highlights a trend towards equal relationships between researchers and Aboriginal Peoples.

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Description

This theme refers to the rules governing participants’ rights over data collected during the course of a research project.

Why is the topic worth considering?

At the end of a research project, the question of ownership of the information and data that has been communicated by communities and their members arises. Who owns the information that has been mobilized and analyzed to produce results? The treatment of this theme is likely to contribute to the establishment of a sharing of decision-making powers between researchers and Aboriginal people insofar as the latter would retain control over this information and data.

Examples of good practices

“The rights to any primary information collected from Innu informants in the course of a study belong to the Innu Nation. Data relating to land use, Aboriginal environmental knowledge and any other form of intellectual property can only be used after specific agreements with the Innu Nation.”

–Innu Nation, Innu Nation Research Agreement, 1998.

“The Treaty Group wishes to ensure that the Hul’qumi’num peoples’ customary stories and related teachings do not become the property of UVic or the CURA supported or affiliated researchers.”

–Hul’qumi’num and The University of Victoria, Memorandum of Understanding between Hul’qumi’num and The University of Victoria, 2005.

Comments

According to the approach cited, researchers do not claim or have absolute control over the information held and communicated by Aboriginal participants. This control rests with the communities and their members. This is, in our view, a clear manifestation of the establishment of shared authority and an approach to ensure that researchers cannot impose their interests with respect to the use of data and/or results.

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Description

This theme refers to the rules governing the sharing of rights associated with the results and benefits arising from the research between the parties to a research project.

Why is the topic worth considering?

The results and benefits arising from a research project may in some cases occur several years after the project’s commencement. For this reason, it is essential to make arrangements for the sharing of rights on the results and benefits in advance of their occurrence, and to avoid potential disagreements and tensions when they materialize. Sharing arrangements can contribute to a division of authority between the Parties, in particular when each of them is involved in the process of granting rights in relation to the results. This theme can also contribute to a greater hybridization of relations between researchers and Aboriginal people through the mobilization of original sharing modalities.

Examples of good practices

General benefit-sharing provision: “Researchers will not exploit informants, or the information gathered from the research, for personal gain or aggrandisement. Where possible and appropriate, fair return should be given for participants’ help and services, which should be acknowledged in the final output.”

–University of Victoria Faculty of Human and Social Development, Protocols and Principles for conducting Research in an Indigenous Context, 2003.

The sharing of intellectual property rights between indigenous and academic actors: “Any research that is published will be held in joint copyright between the Lead Researcher, the participants, and the College on behalf of our ancestors and future generations.”

–Blue Quills First Nations College, Research Ethics Policy, 2004.

Conservation of rights for the sole benefit of one party, in this case the Aboriginal communities: “First Nations consider that the data collections, their interpretation and the results of research they have commissioned or funded are their entire property.”

–Secrétariat de l’Assemblée des premières nations du Québec et du Labrador, Protection de la propriété intellectuelle et de l’intégrité de la gouvernance stratégique des premières nations en matière de recherche, 2011.

Prohibition on the filing of intellectual property rights: The Applicant will not, without the prior informed consent of the First Nation: (a) sell or claim rights to sell plants as herbal medicines or cosmetic products that were obtained as a result of the

–Traditional Knowledge Project. Fnbc, Template traditional knowledge protocol, 2011.

Sharing of royalties from the exploitation of results: “No monetary compensation will be given for participation, but we will turn over to the Secwepemc any financial profits accruing from the publication or use of the original information gathered, to be shared in an appropriate way with individual native elders) who contributed information.”

–Université de Colombie-Britannique, Bannister, Kelly Patricia, 2000.

Comments

The first approach that we have described – the general principle of benefit sharing – is an interesting approach. However, the contours and logistics of this approach remain unclear, particularly with regard to intellectual property rights. The expressions used are very close to the principles of international law. This type of approach could potentially lead to a trend towards equal relationships.

The sharing of intellectual property rights appears to be an approach to sharing authority in relation to the products of research. In some cases, researchers go so far as to concede to communities and their members the majority of rights, which would allow the community to retain control at all times. Relationships then tend towards equality of power.

In the approach that recognizes intellectual property rights for the benefit of one party (in this case, communities and/or their members), researchers abandon any desire to exercise decision-making over the products of research. This is a particularly novel approach compared to traditional practices whereby researchers retain or even concentrate all rights to the products of research. Under this approach, researchers illustrate an acceptance to deeply question their privileges. This does not necessarily prevent researchers from publishing the results of research or benefiting from them.

In the same way as the previous approach, when the instruments studied provide for a prohibition on intellectual property rights, researchers abandon any desire to control decision-making powers over part of the products of the research (those that may be the subject of intellectual property rights). This is a particularly novel approach compared to traditional practices whereby researchers retain all rights to the products of research. Under this approach, there is indeed a sharing of authority between researchers and Aboriginal people for the benefit of Aboriginal people. Researchers can carry out their projects and publish their results. However, they may not register intellectual property rights to these results, at least not without the consent of the participants.

Finally, with respect to the royalty-sharing approach, this is similar to the situation with respect to the sharing of intellectual property rights. Here, communities, their members and researchers share authority over royalty rights.

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PHASE 4
Transversal topics

Description

This theme refers to the mechanisms and procedures which allow participants in a project to follow its progress and evolution.

Why is the topic worth considering?

Research projects can take place over many months or even years. As we have already pointed out, many events can occur during this time and participants may have questions or needs that they wish to express. The existence of follow-up mechanisms during the course of the projects thus become essential to respond to these situations. Project follow-up mechanisms therefore contribute to strengthening the transparency of relations between Aboriginal people and researchers during research projects.

Examples of good practices

Establishment of communication procedures during projects: “The researcher shall report on an ongoing basis to the Executive Director and the Research Steering Committee or designate on the development, planning, implementation and results of the research.”

–Noojmowin Teg Health Centre, Standard Research Agreement Form 1, 2003.

Creation or designation of institutions to monitor research projects: “The research team and the First Nation/community commit to collaborate fully during the research project. They will create a research committee, composed of two researchers and two representatives of the First Nation/community in order to promote fluid communication.”

–Assemblée des premières nations du Québec et du Labrador, Modèle d’entente de recherche, 2014.

Comments

The two types of approaches presented are likely to contribute to greater transparency in the course of research projects. In the first case, there are no institutions responsible for monitoring, which is based solely on rules of communication between researchers and Aboriginal communities. In this sense, the second approach appears more elaborate because dedicated institutions are responsible for monitoring projects. These institutions can also contribute to the hybridization of relationships by including both researcher and indigenous representatives. The creation or designation of monitoring institutions is not necessarily appropriate for all projects, especially for the less complex and broad projects (we are thinking for example of thesis projects which may involve only one researcher).

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Description

This theme refers to the rules and mechanisms applicable for the management of conflicts which may arise between the parties involved during a project.

Why is the topic worth considering?

In the course of research projects, disagreements and misunderstandings between participants and researchers may arise. Conflict resolution mechanisms are elements that can help to manage these situations. These mechanisms allow us to observe the conflict resolution processes and the actors or institutions involved.

Approaches to conflict resolution can thus establish a sharing of authority between researchers and Aboriginal people. These mechanisms also constitute elements that can foster a greater hybridization of relations between researchers and indigenous peoples, for example through the composition of institutions responsible for dealing with the conflicts.

Examples of good practices

Designation of Aboriginal dispute resolution authorities: “It is be the responsibility of the Ktunaxa Treaty Council to monitor the implementation of the Code and to make decisions regarding its interpretation and application, as well as compliance with its provisions.”

–Ktunaxa Nation, Ktunaxa Nation’s Code of Ethics for Research, 1998.

The creation of ad hoc mechanisms for research projects: “Should disagreement between some or all the parties arise over the performance of the Research Project, the concerns parties shall make all reasonable efforts to resolve the dispute amicably and in a respectful manner. If resolution is not possible, the concerned Parties will seek the advice of a mediator chosen by all of them ; in the event that they cannot agree upon a mediator, they shall each nominate one individual and those nominees shall select another individual who shall act as the sole mediator. If there are more than two Parties involved in the dispute, those Parties having similar interests shall nominate only one nominee, The Parties shall make all reasonable efforts to follow the advice provided by the mediator to resolve the dispute.”

–Université de Montréal, le Centre hospitalier de l’Université de Montréal, McGill University, University of Ottawa et le Cree Board of Health and Social Services of James Bay, et The Cree Nation of Mistissini (corporation), the Whapmagoostui First Nation (corporation), Final Research Agreement for a Project on Hyiyiu Anti-Diabetic Plant Medicines, 2009.

Comments

L’approche prévoyant la désignation d’une autorité autochtone pour le règlement des conflits favorise un degré d’hybridation des relations entre les chercheurs et les communautés autochtones très fort. En effet, dans ces cas, les chercheurs adoptent des approches qui prennent en compte ou intègrent les procédures et institutions autochtones contrairement aux démarches classiques qui visent à traiter les différends selon les règles et les institutions de l’univers universitaire.

La création d’institutions et de procédures spécifiques pour les projets impliquant les communautés autochtones et leurs savoirs peut contribuer à une plus grande hybridation des rapports entre les chercheurs et les autochtones. Il convient néanmoins d’analyser en détail la composition et les règles de fonctionnement de ces organismes.

The approach of designating an Aboriginal authority for dispute resolution promotes a high degree of hybridity in the relationship between researchers and Aboriginal communities. Indeed, in such cases, researchers adopt approaches that take into account or incorporate Aboriginal procedures and institutions in contrast to traditional approaches that seek to address disputes according to the rules and institutions of the academic world.

The creation of specific institutions and procedures for projects involving Aboriginal communities and their knowledge can contribute to a greater cooperation between researchers and Aboriginal people. Nevertheless, the composition and operating rules of these bodies should be analyzed in detail.

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Description

This theme refers to the rules governing recognition and application of indigenous frameworks and standards during research projects.

Why is the topic worth considering?

Actors from Aboriginal communities have contributed to the implementation of research framework instruments. Actors from the academic community have also contributed. Several frameworks from different environments can therefore potentially apply to the same project.

In this context, several questions regarding the interaction between these instruments arise:

Is there recognition of Aboriginal frameworks by university executives?
If there is recognition of indigenous frameworks, are there mechanisms for dealing with conflicts between different instruments?

These are essential questions for determining whether Aboriginal frameworks are recognized by actors in the research community and whether the latter tend to want to impose their interests, rules and mechanisms: “Recognition by outside researchers of local ways of doing things is a significant step toward sharing decisions making power and control in research and, some believe, fundamental to entering into a legitimate research relationship” (Bannister and Barrett, 2006).

Example of a good practice

“Researchers have an obligation to become informed about, and to respect, the relevant customs and codes of research practice that apply in the particular community or communities affected by their research. (…) The absence, or perceived absence, of a formal local research code or guidelines does not relieve the researcher of the obligation to seek community engagement in order to identify local customs and codes of research practice.”

–Canadian Tri-Council, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (2nd édition), 2010.

Comments

Under this approach, Aboriginal frameworks must be respected regardless of their nature. More importantly, researchers must actively seek out applicable Aboriginal frameworks. This approach thus contributes to a hybridization of the relationship between researchers and Aboriginal people. It is also a manifestation of power-sharing since researchers must respect Aboriginal frameworks.

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Description

This theme refers to the rules applicable to conflicts between Aboriginal and researcher norms during the course of a project.

Why is the topic worth considering?

Beyond the formal recognition of Aboriginal norms and values, the question that arises is whether principles, rules or mechanisms are provided for in the event of conflicts or discrepancies between the requirements of academic and Aboriginal frameworks. Mechanisms for dealing with conflicts between norms can thus provide information on the potential for domination of the cultures involved, and in particular of the university culture.

Examples of good practices

Aboriginal standards take precedence: “In cases where the ethical guidelines in this protocol are at variance with any other guidelines or laws, the guidelines set out in this protocol shall take precedence.”

–Maliseet Nation Conservation Council/ Maliseet Nation Conservation Council, Maliseet Ethics Guidelines, 2007.

The highest standards shall prevail: “There may be differences between the Guidelines and the requirements of the Aboriginal community involved in a research project. In these situations, the more stringent requirements should prevail.”

–Instituts de recherche en santé du Canada, Lignes directrices des IRSC pour la recherche en santé chez les peuples autochtones, 2007.

Comments

According to the first approach cited, communities claim that their rules should prevail in the event of discrepancies with other sources. This approach contributes to a more equal relationship between legal cultures. It is a manifestation of shared decision-making powers (which researchers are asked to accept), but also of hybridization of relationships, as outsiders are asked to respect indigenous frameworks, including in the event of discrepancies with other sources. Researchers would then agree to adapt their practices insofar as communities must be able to decide on the conditions under which their knowledge is disseminated and used.

According to the second approach cited, the aim is to offer the broadest protection based on the frameworks applicable to the same project. In this way, the scientific culture does not impose its standards on the communities but commits itself to aligning itself with the strictest protection. From this point of view, it is possible to consider that the CIHR (Canadian Institutes of Health Research) guidelines fostered a sociability of conviviality in the relationship between academic and Aboriginal instruments. Indeed, we observe an openness on the part of actors in the research community who do not claim a priori to have the most suitable and protective frames of reference. It should be noted that one of the issues raised by this approach is determining who is the authority empowered to decide the strictest framework.

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