The human genome is the name for the entire sequence of DNA that guides the functioning of our bodies from conception to old age. When something goes wrong with our body, it can be caused by problems in the genome. New technology, which examines the genome, increases the chance of diagnosing the problem and sometimes points to a treatment.
However, doctors are discovering that they are often unable to fully interpret genomic tests in Indigenous Canadians. This is because analysis relies on comparing the DNA sequence of the person being tested to anonymous public databases from peoples of many different ancestries: Ancestry is like an extended family – our genomes are most similar to those we are most closely related to so it works best to compare a patient’s genome to someone from the same ancestral group. Indigenous Canadians are virtually unrepresented in genomic databases. This means their genomes cannot be analyzed optimally.
This project initiated a conversation with Indigenous British Columbians to discover whether or not they would value having a genomic database for Indigenous Canadians, and what concerns they would have for such a database. In collaboration with Indigenous participants, the team created a video explaining the consequences of the non-representation of BC Indigenous people in public genomic databases. The video included a montage of participants’ diverse voices, values, and opinions. This film can be used as the first step to raising broader, province-wide awareness of the issues.
This work represents the beginnings of a conversation regarding disparities in genomic healthcare and represent a necessary step in translation of equitable genomic medicine to all British Columbians.