May 2nd, 2019 – The Silent Genomes Project: First Nations Perspectives on Precision Diagnosis of Rare Diseases in British Columbia

Globally, Indigenous Peoples experience unequal access to genomics-guided health care—a health inequity the World Health Organization calls the “genomic divide.” The Silent Genomes Project aims to address this divide by reducing access barriers to diagnosis of genetic disease in Indigenous children. Understanding First Nations’ needs, preferences, and values is a necessary antecedent to this goal. Dr. Dean Regier and trainee Chenoa Cassidy-Matthews will talk about their developing research designed to understand First Nations’ perspectives surrounding precision diagnosis of rare diseases in British Columbia.

Thank you for everyone’s interest and participation,

this session’s Video is now available for viewing!

Thank you to everyone for your continued interest in our events.

We would like to reiterate that everyone is welcome to our UBCLC sessions.

Our events aim to embody a safe space for everyone of all different backgrounds to have their opinions and voices equally heard.

Date: Thursday, May 2nd, 2019 (PST)
Time: 10 a.m. to 11:30 am
Where: Videoconference OR internet webinar.
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Thank you Dr. Regier and Chenoa for teaching us about Silent Genomes!

About the Presenters:

Dr. Dean Regier PhD, Assistant Professor, Scientist, Cancer Control Research, BC Cancer Agency, School of Population and Public Health, U. of British Columbia Dr. Dean Regier is a Scientist within Cancer Control Research, BC Cancer and the Canadian Centre for Applied Research in Cancer Control (ARCC), and an Assistant Professor, School of Population and Public Health, University of British Columbia. Dr. Regier’s research focuses on understanding access to healthcare and improving methods to estimate the benefit of health care, with applications to genomic technologies and the ‘value of genomic knowledge’ i.e. how genes play a role in our personal lives and how publics value and trade between benefits and risks when making decisions to undergo testing. He incorporates this person-centred evidence into economic models that answer questions of equity and value for money.

Chenoa Cassidy-Matthews MPH, PhD Student Chenoa is a Nishnawbe:kwe from Sachigo Lake First Nation in Ontario. Her family lives across Canada from Vancouver to Halifax, and London to Taloyoak; her strong Nishnawbek lineage and large family drive her passion for Indigenous public health and wellness research. Chenoa’s background includes a Bachelor of Health Sciences from UOttawa and a Master of Public Health from SFU, and she has been working with Indigenous Peoples in Canada and Australia since 2015. She is currently a PhD student in Population and Public Health at UBC, living in Vancouver, and doing her doctoral work alongside the Silent Genomes Project with Dean Regier as her primary supervisor.

Interested in learning more about The Silent Genome Project? Read more on their website:

• https://bcchr.ca/silent-genomes-project