Session 6 - Indigenous data and open science intersection

Indigenous peoples’ data involves legal and ethical considerations and must be managed and shared with care. Research priorities may not reflect the needs of indigenous communities or may reinforce and perpetuate harmful beliefs that stigmatize indigenous peoples. Therefore, researchers must manage information and knowledge respecting First Nations’ fundamental right to determine how this information is collected, used, and disseminated.

In this session, Dr. Aaron Franks will discuss First Nations’ rights to data governance and sovereignty and talk about the First Nations principles of OCAP®.

Learning objectives:

1. Be able to describe the four OCAP® principles
2. Understand First Nations’ collective right to self-determination and self-government
3. Understand the difference between asserting and respecting First Nations’ collective right to data sovereignty
4. Be aware of harms done to First Nations through colonial governance of health data
5. Be aware of First Nations initiatives in governing their health and medical data

About the speaker:

Aaron Franks joined the First Nations Information Governance Centre in May 2018 and is currently Senior Advisor, External Relations and Strategic Initiatives there. After his first career as an actor, he completed an MA in Social Justice and Equity Studies at Brock University and a PhD in Human Geography from the University of Glasgow. He then worked with the Centre for Environmental Health Equity (CEHE) at the University of Manitoba and Queen’s University, the Centre for Indigenous Research Creation at Queen’s, SSHRC, and Universities Canada. Now he proudly supports a small team dedicated to education, training, applied research, and knowledge translation in the First Nations Principles of OCAP®, information governance, and First Nations data sovereignty at FNIGC.

Originally from Edmonton in Treaty Six territory, Aaron is of mixed British, Northern European, and Metis descent with roots in the historic Anglo-Metis communities of St. Andrews, MB, and Birch Hills, SK.  He is a member of the Manitoba Metis Federation and lives on unceded Algonquin territory in Ottawa with his wife Rebecca, their children Casper and Gil, and their dog Archie.