“authentic” research relationships to improve aboriginal health?

“Authentic” Research Relationships to

Improve Aboriginal Health?

By: Julie BullB.A (h), MAHSR

NAHO Conference Our People Our Health November 2009

• 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?


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


Background

Political backdrop of Canadian

representation and history of

research „on‟ aboriginal

peoples

+

National guidelines &

provincial legislation

=

Explicit tension of research

ethics goals


Background: Issue

• Political Backdrop

– Assimilation

– Resistance

• History of research „on‟ aboriginal peoples

– Assimilation

– Resistance


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)


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


Labrador Innu, Inuit, and Metis Communities


Concentric Circles of Belonging


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)


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?”


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.”


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”


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.”


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.”


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”


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.”


Results

Local Review Process

–Guiding principles & values• Community

• Cohesiveness

• Customs

• Respect

• Reciprocity

–Ethical review procedures


Summary of Results

Research imposition

– Exploitation and assimilation

Authentic research

– Consent

– Ownership, control, access

– Research relevence

Local processes

– Values and procedures


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


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.


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.


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.


Conclusion

• Cultural safety and collaboration

• Respect and reciprocity

• Contextualized with the communities

In other words.....

AUTHENTIC RESEARCH


Bridging Gaps?


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).


Tshanaskumitan

Nakkumek

Thank You


“authentic” research relationships to improve aboriginal health?

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