Research Ethics

Research Advisory Committee: Guidance for Researchers

 

Introduction

The work of decolonization has been slow and difficult. Indigenous identities, bodies and lands have all suffered from colonization. Epekwitk (Prince Edward Island) was first home to multiple generations of Mi’ kmaq who were a strong, independent community who took care of and lived off of the island’s abundant natural resources. The early Mi’kmaq established their own methods of self-governance, managing their economy and communities. Today, some Aboriginal Islanders continue to live through traditional means; however many Aboriginal people, including Metis, status and non-status people, have moved into the urban centres of P.E.I. residing off-reserve in towns and cities across the island that rest on traditional Mi’kmaq territory.

Since 1978, The Native Council of Prince Edward Island (NCPEI) has protected the needs of off-reserve, urban Aboriginal people and adheres to a self-governance model of health. An active member of the Maritime Aboriginal People’s Council, which represents 25,000 Aboriginal people in the Maritimes, and the Congress of Aboriginal People (CAP), NCPEI has served as an advocate for the smallest province in Canada. The NCPEI strives to protect the rights of non-status, urban Aboriginal islanders, ensuring their needs are respected and met. In doing so, the NCPEI pursues renewal, independence, and sustainability, while working to seek capacity building opportunities that foster stronger relationships and representations with and within the government, public and private institutions.

 

Guiding Principles for Research involving Indigenous People (5 R’s)

  • Respect
  • Relevance
  • Reciprocity
  • Responsibility
  • Relationships

Development of the NCPEI Research Advisory Committee (NRAC)

At the Native Council of Prince Edward Island Board Governance Meeting on February 21, 2016, a working group was formed to oversee the initiation of the formal NCPEI Research Advisory Committee (NRAC).

With input from the full NCPEI Board of Directors (comprising of community leaders, elders, educators and other professionals), NRAC has developed a set of principles and guidelines to protect individual and community data and information, as well as intellectual and cultural knowledge of urban Aboriginal people and those living off-reserve. The NRAC’s work resulted in a rigorous community based research review process that is outlined in this Guidance Document. These guidelines are needed to promote trust, respect, responsibility and honesty between the researcher and the Aboriginal community and to protect Indigenous people’s rights and assert the OCAP™ principles rooted in self-determination applied to research.

In accordance to the principles of OCAP™ (Ownership, Control, Access, and Possession) and the Tri-Council Policy Statement for Research Involving Humans (TCPS-2)[1], any organization researching Aboriginal people on Prince Edward Island must adhere to an independent, community based, Indigenous code of research guidelines, when such guidelines exist.

These guidelines include:

  • adherence to implementing culture-based frameworks for knowledge sharing
  • fostering a space for participatory research
  • ensuring informed consent
  • providing community support and building local capacity
  • reflect urban Aboriginal cultural needs and interests
  • foster a relationship based upon transparency

 

This is a living document. We are using an iterative approach to strengthen our research governance structures within the Native Council of PEI over the coming months so there will be changes and additions made accordingly.

 

Please check our website for the most current research related materials.

 

Guidance for Researchers: 7 Directions

Initiation, Collaboration, Documentation, Methodologies, Governance, Dissemination, Sustainability

 

  1. Initiation

The Preliminary Discussion is an informal conversation conducted between the NCPEI Research Advisory Council (NRAC) Chair and the potential researcher concerning the possibility of submitting a research application.

The purpose of the preliminary discussion is for the researcher to:

  1. Introduce him/herself and the proposed research project to the NRAC chair  
  2. Ensure that the proposed topic is appropriate for submission
  3. Have the opportunity to ask questions and receive clarifications of terms
  4. Receive initial feedback on whether/how project aligns with NCPEI priorties 

 

Further, the NRAC is enabled the time to explain the ethical principles of working with urban Indigenous people on Prince Edward Island. The reason this is such an important step for the researcher to take is simply that Indigenous communities need to be consulted from the beginning stages of any research project that concerns Indigenous life’s earliest development. This involves taking time to build relationships in Indigenous communities, creating trust and offering transparency before any projects are begun. Too often, Indigenous people are brought into consideration, given a seat at the academic researcher’s table only after funding is secured—long after the vision for the research project has been granted funding. With an astringent history of being used by medical and scientific researchers for experiments and data collection that yielded no benefit to Indigenous people, communities are very mindful about who they choose to work with. Trust needs to be built from the ground up, and not from a top-down approach which sees Indigenous people as subjects to be studied. Rather, Indigenous people need to be partners and leads in research studies concerning their people.

This means Indigenous people should be involved in all levels of research, at every step of the process.

 

2. Collaboration

All researchers should be collaborating directly with Indigenous people when creating and disseminating reports that concern Indigenous people. Indigenous people should be considered the authority when determining needs assessment criteria and recommendations that effect their health and wellness. Developing networks of trust between Aboriginal organizations, communities, and researchers is pinnacle to this process. Ideally, community consultation has been ongoing, and well-under way long before any research proposal has been written, or grant application received. While it is true that many academic funding bodies (i.e. SSHRC, NSSHRC, CIHR) and government funding require strict application deadlines, optimally a researcher, and their team, have thought first about what community engagement and trust-building has to happen before any project is proposed. What this means is simply that community-partnerships with the Native Council of Prince Edward Island are secured, and the community members are participating in all discussions concerning the research proposal. This participation would include have input into the subject matter, hypothesis, and all ideas, while also governing exchanges and offering informed consent and input before the project is even created. This needs to become an initial step to all work with Indigenous communities.

 

3. Documentation

Once the researcher has done the initiation and collaboration pieces, it is time to submit documentation for review.

The purpose of this review by NRAC is to:

  1. Ensure that the research being conducted is of benefit to urban and off-reserve Indigenous people of PEI.
  2. Ensure that the research being conducted respects the spiritual, cultural, social and environmental understandings of urban and off-reserve Indigenous people of PEI.
  3. Ensure that the research being conducted is in keeping with the needs & expectations of urban & off-reserve Indigenous people of PEI.
  4. Ensure that the research being conducted is in keeping with the principles of OCAP™ (ownership, control, access, possession), the Tri-Council Policy Statement, and if applicable, CIHR Guidelines, while respecting the rights of Indigenous people to govern data that concerns them.

Key Documentation to submit:

  • Completed application form
  • REB approval forms/research licenses from other institutions
  • Informed Consent Form & information letter
  • Researcher-Community Agreement or Community Collaboration Agreement
  • Community Engagement and Recruitment Materials

 

4. Methodologies

The integration of Indigenous methodologies is recommended, when possible. Using mixed methods that include western and Indigenous approaches is ideal. Western ideologies that inform authority such as curiosity, competition, assertiveness, analysis, scientific thought, and autonomy are pinnacle to research methods. Therefore, a middle ground is often needed between Indigenous and Western ways of knowing. One model of understanding sees the combined benefit of multiple knowledge frameworks to researchers. By respecting Indigenous ways of knowing that are based upon love, respect, courage, honesty, wisdom, humility and truth, research projects might emphasize the importance of transparency and urban community involvement across all histories. Placing these ways of knowing in tandem is not without its challenges.  

Ensuring a Research Space that Values Participatory Research: Participatory Research is a process that involves collaboration between researchers and the people being researched, or otherwise affected by the research. It endeavours to balance interests, benefits and responsibilities between the researchers and the community concerned, through a commitment to equitable research partnership. Any participatory research arrangement should clearly outline all honorariums and stipends that will be given to participants in exchange for their time and expertise, while also clearly identifying the benefits of the research to the urban Aboriginal community.

Ensuring a Research Space that Values Oral histories: The definition of oral history is simply the recording of a knowledgeable person’s narrative. These personal stories are pinnacle to reconsidering lost histories and negotiating the present. For too long, oral histories and personal storytelling methods were not valued as means of reputable research and knowledge acquisition. Relying on memory and first-hand accounts of events was considered too subjective, especially when these accounts were coming from minority voices. Shared histories are collected and in the process of their telling, and new knowledge is often the result. The knowledge sharer may provide this narrative through storytelling, or through being asked to answer questions about their life experiences. These narratives might concern their observations of an event, or of particular historical markers. For example, an Elder might recount their experience in residential schools for the purpose of preserving this account for others in their community. Oral histories and their collection preserve cultures, enable community building, and ensure knowledge creation for future generations is not simply based upon majority voices in a moment.  

 

5. Governance

The topic of data ownership can be a contentious one. For example, data-collection is a driving-force behind Canada’s statistical analysis, and Indigenous people have long been sought to fill the gaps in knowledge statisticians have concerning their health and well-being. Moreover, information that Elders, community members and healers provide a researcher might be confidential (for instance with respect to the traditional medicines). Research might produce new information, based on what oral histories conveyed, and the question about ownership of this information become paramount.

It is important that transparency and full disclosure about the ways in which the data will be both gathered and used is pinnacle to a successful and ethical working relationship between Aboriginal people and researchers. All researchers must thoroughly explain how the information that the participant shares will be used, who will see it, where this information will be stored, how it will be disposed of, and how it will be kept private. Further, researchers must be transparent about whether or not they desire a model of joint-ownership — where researcher and the NCPEI and the urban Aboriginal community share the ownership of all data and information collected— or whether or not the ownership strictly rests in the hands of the Aboriginal community. When a researcher is in doubt it is best to refer to the Principles of OCAP™ and the Tri-Council Policy Statement.

 

6.  Dissemination

All people concerned in a research project must agree what research findings will be made public, and in which ways that information is to be shared. For researchers, it is important that you publish your findings in scientific/academic or government journals. This is a part of your job as researchers, and is a key way to share knowledge with other people. However, before researchers can make their findings public, they first have to check with all other parties to the agreement by way of formal review of all materials. This review process will give the Indigenous community the chance to be an active author for all materials in the research project, and it will provide a chance to withdraw some information relating to traditional knowledge and experiences if they should so choose. Of course, researchers and Aboriginal community members involved in the project should interpret the research findings and write all drafts together, publishing as a collaborative team when possible. In this way, it is ensured Aboriginal participants are being accredited for their knowledge. These rules apply for all printed materials, visuals, abstracts, presentations and publishable articles.

The onus is on the researcher to present research findings back to the community in a way that is appropriate and accessible to that community. If you are unsure of the best methods to use, contact the NRAC Chair.

 

7. Sustainability

Parachute models of research have proved detrimental to Indigenous communities across Canada. Too often, researchers conduct research, and begin to build relationships and capacity in a community, only to leave that community the moment their research paper is written. Building trust with Aboriginal people requires time and a commitment to longevity. Ethically, ensuring the mechanisms are in place to continue working within communities is ideal. Some researchers will claim the research alone is a benefit; however, meaningful capacity development is reciprocal. Since researchers gain invaluable knowledge from the community (e.g., cultural, traditional and holistic knowledge) their commitment to providing resources to the Aboriginal community for community economic and institutional development is expected. Building local research capacity is an integral component of research involving Indigenous people and researchers ought to hire Indigenous people as research assistants when possible.

 

Final Notes

 

The Key Roles of an Indigenous Community-Based Research

  • To provide a link between the research project team and other community members, and provide relevant, timely information on the project.
  • To place the needs of the community as a first priority in any decision where the community researcher’s roles of community member/researcher may be in conflict.
  • In situations where a research project is promoting healthy lifestyles or practices, to promote the intervention objectives of the project by working closely with community health, social and/or education professionals.
  • To be stewards of the data until the end of the project if requested or appropriate.

 

The Key Roles of an Indigenous Community Partner

  • First and foremost, to represent the interests, perspectives and concerns of community members and of the community as a whole.
  • To ensure that research carried out is done in accordance with the highest standards, both methodologically and from an Aboriginal cultural perspective.
  • To communicate the results of the research to other communities, and to share ideas as well as program and service development for mutual benefit and involvement.
  • To serve as the guardian of the research data during and/or after completion of project.
  • To offer the external and community researchers the opportunity to continue data analyses before the data are offered to new researchers.

 

Recommended Reading

 

Brunger, F., Bull, J., Wall, D. The NunatuKavut model of research oversight: Innovation through collaboration. In Toolbox of Principles for Research in Indigenous Contexts: Ethics, Respect, Equity, Reciprocity, Cooperation and Culture. Available from http://www.cssspnql.com/docs/default-source/centre-de-documentation/toolbox_research_principles_aboriginal_context_eng16C3D3AF4B658E221564CE39.pdf?sfvrsn=2 

 

Bull, J. (2016). A Two-eyed seeing approach to research ethics review: An Indigenous perspective. In The Ethics Rupture: Exploring Alternatives to formal Research Ethics Review. Eds W.C. Van den Hoonaard and A. Hamilton. University of Toronto Press.

 

Bull, J. R. (2010). Research with Aboriginal Peoples: Authentic Relationships as a Precursor to Ethical Research. The Journal of Empirical Research on Human Research Ethics (JERHRE), vol. 5(4), 13-22.

Kovach, M. (2009). Indigenous Methodologies Characteristics, Conversations, Contexts. University of Toronto Press: Toronto, Buffalo, London.

Tuhiwai-Smith, L. (1999). Decolonizing Methodologies: Research and Indigenous Peoples. Zed Books Ltd.: University of Otago Press.

Wilson, S. (2008). Research is Ceremony: Indigenous Research Methods. Fernwood Publishing.

Urban Aboriginal Knowledge Network (2015). Guiding Ethical Principles. Available from http://uakn.org/wp-content/uploads/2014/10/Guiding-Ethical-Principles_Final_2015_10_22.pdf

 

Required Reading

OCAP™ - http://fnigc.ca/ocap.html 

TCPS-2 - http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2eptc2/Default/

 

All research inquiries can be made to the Chair of the NCPEI Research Advisory Committee (NRAC) by email at NCPEI.Ethics@gmail.com