Second DNA on Loan Forum Report Summary

In April 2024, the Canadian Institutes of Health Research Institute of Genetics (CIHR-IG) and the Canadian Institutes of Health Research Institute of Indigenous Peoples' Health (CIHR-IIPH), in partnership with Genome Canada, hosted the second DNA on Loan Forum in Wendake, Québec. The goal of the forum was to share and build upon the knowledge of good policy and practices within the field of genomics and biobanking with Indigenous populations. The term "DNA on loan" represents a shift in the academic way of thinking about biological samples by acknowledging the continued ownership of the sample donor and the importance of consent in research; the sample is being loaned to the researcher. This shift emphasizes building relationships and maintaining respect for community, culture, and values when conducting research. The meeting was grounded in prayer by a local Elder, acknowledging the significant nature of the topics and creating a safe place for discussion.

The first DNA on Loan Forum provided a foundational framework that emphasized the importance of recognizing biological samples as on loan from the donors and the need for community engagement grounded in respect and continuous consent. These early discussions catalyzed a shift toward Indigenous data sovereignty and self-determination, which became guiding principles expanded upon in the second edition.

Forty-nine participants attended the two-day forum, including Indigenous Elders and community members, researchers, government employees, scientists and scholars of Indigenous and settler backgrounds, each providing unique insights and perspectives. The hybrid event showcased a range of voices including First Nations, Métis, Inuit, Hawaiian Native, Australian Aboriginal and Māori, further advancing international Indigenous research partnerships and collaborations for Canada.

Broad themes emerged throughout the forum, highlighting the importance of research equity and justice for the health and well-being of Indigenous Peoples.

Slow Down to Speed Up

Prioritizing transparent communication and open dialogue, the need for relationship building grounded in respect, trust and reciprocity between Indigenous Peoples and non-Indigenous researchers is key to successful and respectful research. The foundation established by slowing down to engage meaningfully at the outset should ultimately accelerate progress while aligning health research with community priorities.

• Include a diverse range of voices and perspectives in research planning and decision-making to create a mutually agreed upon governance structure that reaffirms Indigenous self-determination, independence, and data sovereignty.
• Respect and adopt Indigenous knowledge and perspectives while ensuring research aligns with community and individual priorities and needs.
• Rely on pre-existing relationships to navigate uncertainty: "What's hard takes a long time; what's impossible takes a little longer."

Learn from the Past

The first forum underscored the value of ongoing relationship building and long-term partnerships as essential pillars for success, setting the stage for deeper dialogue and collaboration in this year's event.

Honouring the histories of past generations by incorporating genealogy, traditional knowledge, and ceremony can greatly benefit Indigenous health research. In turn, research can help preserve culture, language, and stories by ensuring that the past continues to guide and enrich the future.

• Understand the historical, social, political and geopolitical realities that have and continue to shape the health landscape for Indigenous peoples in Canada.
• Recognize the impact that culture and identity have in creating a research atmosphere that is safe and responsive to Indigeneity.
• Establish and adhere to governance structures created by or with Indigenous people, including emphasis on the importance of community member involvement in research and attaining collective consent. Remember: "Nothing about us, without us."

Look to the Future

Working towards a decolonialized future for health research and care is vital for supporting and empowering Indigenous faculty members, students, leaders, and communities. Prioritizing capacity building, Indigenous-led initiatives, and collaborations that allow for the alignment of health research, policy, and practice directly benefits Indigenous peoples and creates a more inclusive and equitable health system.

• Increase funding for Indigenous-led, or relevant, genomics research, grants, and university faculty positions.
• Incorporate traditional knowledge such as the Two-Eyed Seeing approach or the Seven Sacred Teachings in research and its translation to health care.
• Ensure data sovereignty through governance structures, ongoing communication, and community involvement in research so that Indigenous communities have control over their genomic data throughout its use in research.

Remain Present

Honouring promises through continuous processes of communication and transparency, active and informed consent, and adherence to cultural protocols is needed to (re)build trust and ensure mutual understanding and respect. Embracing inclusivity, co-learning, and emotional awareness to foster research that benefits Indigenous people and communities will help ensure cultural safety and flexibility in a collective journey toward health equity.

• Ensure mutual understanding by adhering to commitments of ongoing transparency and informed consent.
• Remain flexible and responsive to how data and research align with research participants' needs and wishes.
• Build and maintain relationships among communities, individuals, and researchers to create a safe atmosphere grounded in trust to enable co-learning.

Date modified:

2024-12-17