A Biocultural Ethics Approach 71
TCPS2 Chapter 9 clarifies that neither “engagement with formal leadership”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 115) of an Indigenous
community nor “community agreement that a research project may proceed”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 123) are substitutes for
seeking the consent of individual participants. As well, community engagement
requires researchers be “informed about formal rules or oral customs that may
apply in accordance with a particular First Nations, Inuit or Métis authority”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 112).
Collaboration – TCPS2 Article 9.12 (Canadian Institutes for Health (CIHR)
et al., 2018, p. 123) advises researchers and communities to “consider applying
a collaborative and participatory approach as appropriate to the nature of the
research, and the level of ongoing engagement desired by the community” where
“the nature and degree of collaboration between the researcher and the community will depend on the nature of the research, and the community context”.
Collaboration is described as based on mutually respectful relationships between
colleagues who contribute their different expertises, capacities and perspectives
in productive ways for mutual benefit. Collaboration is not seen as equal contributions; rather, different partners may take primary responsibility for different
aspects of the research.
A participatory approach is described as “action-oriented” and “based on
respect, relevance, reciprocity and mutual responsibility”, where “those involved
in the research process collaborate to define the research project, collect and analyze the data, produce a final product and act on the results” (Canadian Institutes
for Health (CIHR) et al., 2018, p. 124). The TCPS2 advises that the terms and
conditions of collaborative and participatory research be set out in a research
agreement to clearly define the research relationship.
Research agreements – After formal community engagement and before
initiating participant recruitment or research activities, TCPS Article 9.11 specifies that the terms and activities of researchers and Indigenous communities,
including consent processes, should be set out in a research agreement. Research
agreements are described as the “primary means of clarifying and confirming
mutual expectations and, where appropriate, commitments between researchers
and communities”. At minimum, research agreements are seen to achieve the
following (Canadian Institutes for Health (CIHR) et al., 2018):
• Address ethical protections related to securing individual consent;
• Specify commitments regarding collective community participation and
decision making, sharing of benefits, and review or updating of the research
agreement;
• Set out the purpose of the research;
• Detail mutual responsibilities in project design, data collection and
management, analysis and interpretation, credit due to knowledge holders,
protection (and non-disclosure) of restricted knowledge, sharing of benefits, sharing of royalties flowing from intellectual property where applicable;
TCPS2 Chapter 9 clarifies that neither “engagement with formal leadership”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 115) of an Indigenous
community nor “community agreement that a research project may proceed”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 123) are substitutes for
seeking the consent of individual participants. As well, community engagement
requires researchers be “informed about formal rules or oral customs that may
apply in accordance with a particular First Nations, Inuit or Métis authority”
(Canadian Institutes for Health (CIHR) et al., 2018, p. 112).
Collaboration – TCPS2 Article 9.12 (Canadian Institutes for Health (CIHR)
et al., 2018, p. 123) advises researchers and communities to “consider applying
a collaborative and participatory approach as appropriate to the nature of the
research, and the level of ongoing engagement desired by the community” where
“the nature and degree of collaboration between the researcher and the community will depend on the nature of the research, and the community context”.
Collaboration is described as based on mutually respectful relationships between
colleagues who contribute their different expertises, capacities and perspectives
in productive ways for mutual benefit. Collaboration is not seen as equal contributions; rather, different partners may take primary responsibility for different
aspects of the research.
A participatory approach is described as “action-oriented” and “based on
respect, relevance, reciprocity and mutual responsibility”, where “those involved
in the research process collaborate to define the research project, collect and analyze the data, produce a final product and act on the results” (Canadian Institutes
for Health (CIHR) et al., 2018, p. 124). The TCPS2 advises that the terms and
conditions of collaborative and participatory research be set out in a research
agreement to clearly define the research relationship.
Research agreements – After formal community engagement and before
initiating participant recruitment or research activities, TCPS Article 9.11 specifies that the terms and activities of researchers and Indigenous communities,
including consent processes, should be set out in a research agreement. Research
agreements are described as the “primary means of clarifying and confirming
mutual expectations and, where appropriate, commitments between researchers
and communities”. At minimum, research agreements are seen to achieve the
following (Canadian Institutes for Health (CIHR) et al., 2018):
• Address ethical protections related to securing individual consent;
• Specify commitments regarding collective community participation and
decision making, sharing of benefits, and review or updating of the research
agreement;
• Set out the purpose of the research;
• Detail mutual responsibilities in project design, data collection and
management, analysis and interpretation, credit due to knowledge holders,
protection (and non-disclosure) of restricted knowledge, sharing of benefits, sharing of royalties flowing from intellectual property where applicable;