Established to provide cultural oversight, strategic advice and decisions in support of the collaborative expansion and utilization of the Indigenous Background Variant Library (IBVL) including respectful, culturally safe policies regarding access to data for clinical diagnoses and related research, while engaging future generations of Indigenous scholars and community members.
Terms of Reference, SG-IBVL Governance Committee

 

Committee members

Susan DowanSusan Dowan

Lead

Susan Dowan is a mother of five and grandmother of one, and is of Cree background originally from Manitoba. She successfully graduated with a degree in Aboriginal Studies from the University of Toronto in 2004 and has worked with in various Indigenous organizations in Eastern Ontario. Her career journey includes advocacy and support services in the areas of Child Welfare; Violence against Indigenous Women and Children-Crisis prevention Services; Truth and Reconciliation; and Traditional Indigenous Healing. Susan is also the mother of a son born with a rare genetic condition known as PRUNE1-associated disorder. Her son was recorded as 5th case worldwide. During his diagnostic odyssey, her son experienced numerous hospital admissions at the Hospital for Sick Children in Toronto. He remained undiagnosed until a re-analysis of his Whole Exome Sequencing data revealed his diagnosis. Susan and her family effectively advocated on behalf of her son to find his diagnosis. Her goals were to create understanding of her son's health struggles and medical journey, to open doors to research, and to positively impact future generations of children with undiagnosed rare disorders.

 

​Bonnie DaviesBonnie Davis

A. Darlene Davis is a band member of the Six Nations of the Grand River. She is wolf clan. She graduated as a Registered Nurse in Hamilton in 1974. She has held many positions over the last 46 years and has been doing community health research for Six Nations Health Services for the past 21.5 years affiliated with McMaster University and the Population Health Research Institute. She has worked in a hospital setting, in a medical clinic, in a public health clinic and currently in White Pines Wellness Centre. Some of her research involvement since March, 1999 includes: The Study of Health Assessment and Risk Evaluation in Aboriginal People with the main paper accepted in the medical journal called The Lancet in 2001. Completed Action to control cardiovascular risk in diabetes, a clinical trial of United States and Canada. Completed Diabetes Reduction Assessment with Medications, Heart Outcomes Prevention Evaluation Study with Medications. Completed the Canadian Alliance for Healthy Hearts and Minds clinical Study involving 8 First Nations across Canada. Completed the Healthy Roots Pilot Study involving “Traditional Foods”, and currently working with the Aboriginal Birth Cohort Study and the Healthy active living for families with young children study. Team member of the Alliance working group and the Silent Genomes Indigenous Background Variant Library steering committee. All for Health.

 

Joe KeesickquayashJoe Keesickquayash

Joe is the father of Edward who was born with a rare genetic condition known as PRUNE1-associated disorder. Edward was recorded as the fifth case worldwide. During his diagnostic odyssey, Edward experienced numerous hospital admissions at the Hospital for Sick Children in Toronto and Peterborough Regional Health Centre in Peterborough, Ontario. Joe was hopeful that a diagnosis would be found to understand his son's medical journey. After his second birthday Edward remained undiagnosed until a re-analysis of his Whole Exome Sequencing data revealed the diagnosis was PRUNE1-associated disorder.The journey to find a diagnosis for Edward was challenging. Despite the challenges, Joe remains hopeful that the experience with Edward’s journey will facilitate further opportunity for Whole Exome research among Indigenous families of children with undiagnosed disorders. Joe is optimistic that this experience will help future generations of children and parents of children with undiagnosed rare disorders.

 

PHPeter Hutchinson

Métis Nation of BC (MNBC)

Dr. Peter Hutchinson is an Assistant Professor in Indigenous Studies at the University of British Columbia Okanagan, within the Irving K. Barber Faculty of Arts and Social Sciences. His research focuses on the intersection of culture and health promotion, exploring how cultural practices can enhance well-being in Indigenous communities. Dr. Hutchinson has worked at the Canadian Partnership Against Cancer, where he worked to deliver cultural safety training, worked on creating sustainable funding for First Nations, Inuit, and Métis cancer care and screening programs, and facilitated knowledge mobilization across cancer care specific to First Nations, Inuit, and Métis health.

More recently, he collaborated with the University of Saskatchewan, aiding in infrastructure development to support Indigenous Research Methods and further cultural safety training. His current work involves engaging with Indigenous communities and health service providers to examine the decolonization of health services and address racialized experiences within healthcare.

Dr. Hutchinson’s research interests also encompass chronic disease awareness among the Métis Nation of BC, where he led initiatives that utilized data linking between the MNBC citizenship registry and BC Ministry of Health records. He also worked closely with Métis harvesters to document the connection between cultural activities and health, emphasizing the need for tailored survey questions that reflect specific activities and regional contexts. This project also produced videos highlighting the significance of land connection for health. Currently, Dr. Hutchinson is currently collaborating with Indigenous communities in British Columbia and Alberta, focusing on innovative health promotion strategies rooted in cultural understanding and community engagement.

 

LMLisa Mayotte

Lac La Ronge community member

 

 

 

 

Eduardo VidesEduardo Vides

Advisor

Eduardo Vides has worked continuously at different capacities for and with Métis organizations over the last 12 years, on Métis topics such as health governance, social determinants of health, health surveillance, policy and research. Eduardo has assisted Metis leaders in their health sector work and he also has served on several advisory committees and working groups representing the Métis National Office. Eduardo is also an international health consultant, who has collaborated with and worked for various Latin-American organizations including Pan-American Health Organization (WHO/PAHO), governments, Academia and Indigenous organizations and communities. Dr. Vides is an International Graduated Physician. He earned a medical degree from the Autonoma of Guadalajara University (México), a MPH from the University of London (UK) and a MHA from the EAN University (Colombia).

 

Julie MorrisonJulie Morrison

Gitxsan Community Member

 

 

 

SeqwaliyaSyexwaliya Ann Whonnock

Elder, Squamish nation

Syexwaliya is a Knowledge Carrier & Elder Advisor from Squamish Nation with strong Indigenous worldviews, ancestral knowledge and traditional teachings, widely respected and acknowledged for her work and energy commitment to her community.