BC is home to some of the most cutting edge genomics technology, research and clinical activities in the world. There is, however, an increasingly urgent need to share and aggregate genomics data to maximize the possibilities of this exceptional cluster. In research and clinical settings there is a huge amount of genomics data being generated and it needs to be integrated both across research groups and with clinical data.
The Global Alliance for Genomics and Health (GA4GH) is a policy-framing and technical standards-setting organization that seeks to enable responsible genomic data sharing within a human rights framework. The work being done by the GA4GH is an excellent start but collectively we need to ensure that in BC we go beyond this to true data sharing.
Some of the challenges around data sharing go back to patient consent. Personal genomics data should belong to the individual but in our current system it belongs to the healthcare system. In the UK and France they are introducing a dual consent system where patients can agree to share their data for multiple purposes- that system could potentially be applied here in Canada. Only with systematic change can we enable the true integration of, and most importantly the use of, genomics data to improve healthcare outcomes.
We need to advocate and support policy change and the review of privacy laws. As a collective of patients, researchers, clinicians and other stakeholders we can bring precision health to BC.