Indigenous peoples and inclusion in clinical and genomic research: Understanding the history and navigating contemporary engagement

Waanders, Angela J.; Brown, Alex; Caron, Nadine R.; Plisiewicz, Alexa; McHugh, Sean T.; Nguyen, Thinh Q.; Lehmann, Kaitlin; Stevens, Jeffrey R.; Storm, Phillip; Resnick, Adam; Davidson, Tom B.; Mueller, Sabine; Kline, Cassie

doi:10.1016/j.neo.2023.100879

Cited by 3 publications

(3 citation statements)

References 33 publications

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“…However, requirements like active parental consent can leave children and youth with inequitable access to research opportunities [ 3 ] or health screening like the ACHWM. Indigenous peoples are already underrepresented in health research [ 4 , 5 ], further complicated by the issue of consent for children. Few legal statutes outline a specific age of consent; for example, Ontario’s Education Act requires parental consent for IQ and personality testing of students under eighteen [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

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Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review

Peltier,

Dickson,

Grandpierre

et al. 2024

BMC Med Ethics

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Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. Results We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. Conclusions Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.

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Section: Introductionmentioning

confidence: 99%

“…Few legal statutes outline a specific age of consent; for example, Ontario’s Education Act requires parental consent for IQ and personality testing of students under eighteen [ 6 ]. Consent process improvements can help increase Indigenous Peoples’ representation in research [ 4 , 5 ].…”

Section: Introductionmentioning

confidence: 99%

Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review

Peltier,

Dickson,

Grandpierre

et al. 2024

BMC Med Ethics

View full text Add to dashboard Cite

show abstract

“…Waanders et al. provide a unique perspective on how to prioritize the inclusion of Indigenous Peoples in pediatric brain tumor research with cultural sensitivity [12] , providing a roadmap that will be useful for clinical research across all disease types and age groups.…”

mentioning

confidence: 99%