By: Julie Bull B.A (h), MAHSR University of Prince Edward Island, Atlantic Regional Training Centre Atlantic Regional Health Research Program Memorial University NAHO 2009 National Conference

1. “Authentic” Research Relationships to
Improve Aboriginal Health?
By: Julie Bull
B.A (h), MAHSR
NAHO Conference Our People Our Health November 2009

2. • How can research proceed responsibly
against a backdrop of colonialism and
inequity?
• What is the role of community
involvement in research?
• Where does the paradigm of
individual informed consent break
down and why?
• What are the limitations of benefit-
sharing as a model for ethical
research with communities?
NAHO Conference Our People Our Health November 2009

3. The outer ring of the graphic is inspired by the
traditional native medicine wheel, with the 4 colors
representing the focus on the spiritual, mental,
emotional, and physical health. The eagle, a
traditional symbol of protection, is combined with the
scales, a symbol representative of justice and ethics, to
form a caduceus – a modern representation of
Western medicine. Lines drawn from the edge of the
outer ring toward the center in the fashion of a
dreamcatcher form an inukshuk.
The interconnectedness of the design illustrates
Labrador Innu, Inuit, and Metis people working
together. As a whole the graphic symbolizes the dream
of combining traditional and modern medicine, while
focusing on the importance of health research ethics
NAHO Conference Our People Our Health November 2009

4. Background
Political backdrop of Canadian
representation and history of
research „on‟ aboriginal
peoples
+
National guidelines &
provincial legislation
=
Explicit tension of research
ethics goals
NAHO Conference Our People Our Health November 2009

5. Background: Issue
• Political Backdrop
– Assimilation
– Resistance
• History of research „on‟ aboriginal
peoples
– Assimilation
– Resistance
NAHO Conference Our People Our Health November 2009

6. Background: Issue
• Canadian Institutes of Health
Research Guidelines for Research
Involving Aboriginal Peoples
(2007)
• Provincial Health Research Ethics
Authority
• Draft 2nd edition of TCPS (2009)
NAHO Conference Our People Our Health November 2009

7. Background: Context
“Community Health Research in
Labrador: Listening, Learning and
Working Together”
Labrador
-Nunatsiavut Government Department
of Health and Social Development
-Sheshashui Innu Health Commission
-Mushuau Innu Health Commission
-Labrador Metis Nation
NAHO Conference Our People Our Health November 2009

8. Labrador Innu, Inuit, and Metis Communities
NAHO Conference Our People Our Health November 2009

9. Concentric Circles of Belonging
NAHO Conference Our People Our Health November 2009

10. Method
Participation:
to have a part of or share in something
Action:
the bringing about of an alteration
...using research as a tool
Theoretical Assumptions
 Reality is situated (Berger & Luckmann, 1966)
 Researchers cannot acquire the depth
of understanding the „community‟
already has through living (Elden & Chisholm,
1993)
NAHO Conference Our People Our Health November 2009

11. Results
Research imposition
 Assimilation, exploitation, exoticism
“Quite often, when you get involved in
research, you‟re influenced by numbers
and statistics and exotic backgrounds of
people and things like that.”
“don‟t they know everything there is to
know about us by now?”
NAHO Conference Our People Our Health November 2009

12. Results
“[There were] researchers coming through the
hospital and cutting people‟s hair and blood
samples and going up the coast and doing the
same thing, and nobody is really sure what
they‟re doing or why they‟re doing it and, you
know, hiring guides to take them to [a
community] and stuff like that by boat, and
they really have no idea of what the purpose of
their study was. You know, brought them for
a boil-up and all of this stuff. They never did
speak about the study. They just… you know,
enjoyed the Labrador experience and took
what they needed and left.”
NAHO Conference Our People Our Health November 2009

13. Results
Authentic research
 Consent
“It can‟t be a broad consent that then gives the
person carte blanche to do whatever they want
with that research.”
“the consent cannot be so stringent as to
inhibit a researcher from writing a journal
article”
NAHO Conference Our People Our Health November 2009

14. Results
Authentic research
 Ownership, control, access
“in the last few years that people
[in Labrador] are recognizing how
much of a benefit that might be to
communities … to be involved …
and to decide on what kind of
research is happening in their
community.”
NAHO Conference Our People Our Health November 2009

15. Results
Authentic research
 Research relevance
“we need to make sure that research that‟s
taking place are on topics that are going to be
beneficial to us and not only to the researcher to
get their masters degree.”
“[R]esearchers have [this idea] that ...academic
freedom means that you don‟t have that obligation
to people…the community has a stake in what
you‟re doing.”
NAHO Conference Our People Our Health November 2009

16. Results
“[Y]ou would have to apply a philosophy
of equity …not to do things to catch
headlines or to make a story or to make
yourself feel good, or to have alarming
statistics for certain areas or whatever, but
to go in and look for the truth and get a
balanced approach and then apply it. Find
a way to apply your unbiased research to
unbiased results, and I think that would
be quite ethical”
NAHO Conference Our People Our Health November 2009

17. Results
“We would like to see
some of the research get
put into use instead of
continually conducting
research that doesn‟t
seem to go further than
a technical written
report.”
NAHO Conference Our People Our Health November 2009

18. Results
Local Review Process
– Guiding principles & values
• Community
• Cohesiveness
• Customs
• Respect
• Reciprocity
– Ethical review procedures
NAHO Conference Our People Our Health November 2009

19. Summary of Results
Research imposition
– Exploitation and assimilation
Authentic research
– Consent
– Ownership, control, access
– Research relevence
Local processes
– Values and procedures
NAHO Conference Our People Our Health November 2009

20. Policy Implications
• Canadian Institutes of Health
Research (CIHR)
– „downstream‟ approach will only
work if other stakeholders
comply (i.e. REBs, funders)
• Provincial Health Research
Ethics Authority (PHREA)
– Even with centralization,
community autonomy and self
governance should be respected
NAHO Conference Our People Our Health November 2009

21. Recommendations
The provincial board should take this
opportunity to actively engage aboriginal
communities in Newfoundland and
Labrador in the development of its
processes and procedures. This is the
perfect opportunity to set precedence in
the country to ensure that aboriginal
review boards have the capacity and
power to act, rather than feeling
exploited and disengaged.
NAHO Conference Our People Our Health November 2009

22. Recommendations
It is recognized that little research has
direct benefit to the research participant
or the community yet “benefit sharing”
is included in the CIHR Guidelines (and
many community guidelines). This
should be explained to researchers who
can then comply by offering training,
capacity building, or other indirect
benefits of research.
NAHO Conference Our People Our Health November 2009

23. Recommendations
Communities believe and practice an
interconnectedness of content, agenda,
and ethics: This should be explicitly
available information because researchers
are likely to generally separate these three
components and focus primarily on
research ethics.
NAHO Conference Our People Our Health November 2009

24. Conclusion
• Cultural safety and collaboration
• Respect and reciprocity
• Contextualized with the communities
In other words.....
AUTHENTIC RESEARCH
NAHO Conference Our People Our Health November 2009

25. Bridging Gaps?
NAHO Conference Our People Our Health November 2009

26. References
Atkins, C. J., Reuffe, L., Roddy, J. E., Platts, M. J., Robinson, H.S., & Ward, R. (1988). Rheumatic disease in
the Nuu-Chah-Nulth native Indians of the Pacific Northwest. Journal of Rheumatology, 15, 684-690.
Canadian Institutes of Health Research (CIHR). (2005). CIHR Guidelines for Health Research Involving
Aboriginal Peoples: Draft for Consultation. Retrieved April 1, 2007, from http://www.cihr-
irsc.gc.ca/e/documents/CIHR_ethics_guidelines_V1_e.pdf
CBC News (2005). School abuse victims getting $1.9B. Retrieved April 8, 2008, from
http://www.cbc.ca/story/canada/national/2005/11/23/residential-package051123.html.
Dokis, Terry. Cartoons
Ermine, W.J. (2000). The Ethics of Research Involving Indigenous Peoples. University of Saskatchewan.
Unpublished Master‟s Thesis.
National Aboriginal Health Organization (NAHO). (2000). Governance of Research Involving Human Subjects:
Research Brief. Ottawa, Ontario.
Poole, R. (1972). Towards Deep Subjectivity. New York, NY: Harper Torch Books.
Saskatchewan Indian. (2004). History of Indian Act. Retrieved February 1, 2008, from
http://www.sicc.sk.ca/saskindian/a78mar04.htm.
Snarch, B. (2004). Ownership, Control, Access, and Possession (OCAP) or Self-Determination Applied to
Research, A Critical Analysis of Contemporary First Nations Research and Some Options for First Nations
Communities. Journal of Aboriginal Health, 14(16).
NAHO Conference Our People Our Health November 2009

27. Tshanaskumitan
Nakkumek
Thank You
NAHO Conference Our People Our Health November 2009