This is a partnership between researchers from the Indigenous Health Program at BC Women’s and Children’s Hospital and from UBC’s Department of Medical Genetics. The goal is to address a gap in healthcare for Indigenous peoples.
The goal of this project is to initiate preliminary conversations with individuals of Indigenous ancestries to raise awareness and to determine their perspectives, values, and concerns about a medical test called genomic sequencing. It is a relatively new and powerful test to diagnose conditions and sometimes aid in their treatment.
To obtain the most accurate results from genomic sequencing, geneticists need to be able to compare a patient’s results to those of healthy individuals of the same ethnicity. But many groups, including Indigenous Peoples, are under-represented in the current databases. This means that interpreting the results for Indigenous Peoples can be challenging.
The project holds sharing circles with Indigenous Peoples to try to explain the current situation in regards to the test, and to find out what people’s thoughts and concerns are about the test, databases, potential barriers and potential solutions.
At The Learning Circle they will share more detail about the project, including the philosophy of community-based participatory research, embedding culturally safe practices of research with Indigenous populations, and where collaboration with study participants helps provide validity to the project’s results.
About the presenters:
Patricia Birch, Co-Lead on this project, Clinical Associate Professor, Department of Medical Genetics, University of British Columbia – Is a researcher, educator, manager, and nurse. The common threads throughout her career have been a desire to improve access, equity, and quality of family-centred clinical care. Her current interests include decisional science, particularly shared decision-making in genetic counselling, and family-oriented care in genomics medicine.
Jenny Morgan, Co-Lead on this project, MSW, RSW (Gitxsan First Nation) is the Director for Indigenous Health at the BC Women’s Hospital and Health Centre. She completed her masters in social work with an Indigenous specialization at the University of Victoria, her BSW at UBC, and is currently enrolled in the doctorate of education through Western University (UWO), studying organizational leadership and retention of Indigenous workers in health care. Jenny is a sessional instructor in the UBC School of Social Work and is on the Board of Directors with the BC College of Social Workers.
- Working Together with Indigenous Peoples to Enhance Equity and Access in Precision Health
We will be holding a sharing circle at UBC after the Learning Circle (date t.b.a.) and will provide information about participating in this event at the following link: http://friedmanlab.org/IPG
PDF Version of PowerPoint of Presentation:
Also, here is the link to Canada’s new Genetic Non-Discrimination Act, in full:
There is a much more understandable version summarized here:
Video of Their Presentation:
** There will be no certificates for the participants of this session**