Lecture 11

Question 1

Why does indigenous health research have a troubling past?

Answer 1

• Experiments have been conducted on reserves and in residential schools
• Experiments have been conducted without consent
• Many of these experiments have been conducted, not only with the federal government’s knowledge, but also in cooperation with various federal departments

Question 2

Indigenous Health Research: Nutrition

Answer 2

• Nutritional experiments are difficult to conduct because one needs a test group
• What this means is, is that a researcher needs hungry, malnutritional people to prove a hypothesis
• This type of research is considered unethical by many

Question 3

In 1942, researchers, including Canada’s leading expert on nutrition,

Answer 3

identified the malnutrition and hunger in Indigenous communities

Question 3

Malnutrition researchers began contributing character traits,

Answer 3

previously regarded as hereditary, to malnutrition

Question 4

In others, children were given experimental supplements

Answer 4

to determine whether there was a way to mitigate malnutrition—they didn’t work

Question 5

Rather than improving conditions, children became

Answer 5

more anemic, likely contributing to more deaths

Question 6

How did this kind of inhumane research happen?

Answer 6

• Setting out with the “best intentions”
• Experiment participants were already marginalized and vulnerable
• Participants had no voice
• No one was looking out for the participant’s best interests

Question 7

Step in the right direction…

Answer 7

• Contemporary research ethics boards have been established
• The ethics boards control protocols & standards to govern research involving humans
• That said, Indigenous communities critique these institutions and their protocols
  - Claim standards and protocols are in place to protect universities and researchers, not actual participants

Question 8

There is hope though…

Answer 8

• This is why self-determination in regards to research ethics protocols is essential
• Taking control of research ethics and protocols will ensure positive outcomes for Indigenous participants, and the safety of Indigenous peoples in research
• The emerging guidelines largely aim to establish meaningful and mutually beneficial relationships

Question 9

Types of research Indigenous communities desire:

Answer 9

• Community-driven
• Self-determined
• Action-oriented
• Culturally responsive
• Research that upholds Indigenous sovereignty of data and information

Question 10

These types of research fall under two schools of thought

Answer 10

Those that seek to change the research structure from within, and those that wish to create a new path forward

Question 11

Important research and academic institutions have increasingly taken up these guidelines

Answer 11

Ex) Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans governs research involving humans that is funded in Canada
Ex) University of Manitoba’s Framework for Research Engagement with First Nations, Metis, and Inuit Peoples was developed in partnership with Indigenous communities

Question 12

Principles defining these important frameworks are…

Answer 12

• Ownership: refers to the collective right of First Nations to their cultural expertise, data, and information
• Control: affirms that First Nations, their communities are involved in research projects from start to finish
• Access: refers to the fact that First Nations, much have access to information and data about themselves
• Possession: raises the point of physical control of data collected

Question 13

Ownership:

Answer 13

refers to the collective right of First Nations to their cultural expertise, data, and information

Question 14

Control:

Answer 14

affirms that First Nations, their communities are involved in research projects from start to finish

Question 15

Access:

Answer 15

refers to the fact that First Nations, much have access to information and data about themselves

Question 16

Possession

Answer 16

raises the point of physical control of data collected

Question 17

In addition to ethical principles and frameworks, Indigenous peoples have to establish their own policies. Policies that

Answer 17

• Go beyond merely acquiring approval from community leadership
• Balance individual and collective rights
• Uphold cultural norms and values
• Integrate Indigenous self-determination into the research

Question 18

Although frameworks are a good start…

Answer 18

• There is a need to explore informal, oral, and/or non-publicly facing Indigenous research protocols
• There is a need to further examine how efforts to promote and uphold Indigenous research protocols and frameworks contributes to research, health, social outcomes, etc.
• There is a need to evaluate how Western institutions and funding agencies are upholding Indigenous research ethics, protocols, and frameworks