Last month, a couple hundred advocates, policy leaders, patients and the public gathered virtually and in Bethesda, Washington, for a National Cancer Institute workshop to explore the impact of personal control of genomic data sharing to research, clinical care, and participants' well-being and engagement. It was interesting to be in a meeting where patients were at the centre of precision oncology and to explore what opportunities exist to get them more involved. Topics at the NIH Moonshot "Symposium on Personal Control of Genomic Data for Research," included privacy and security concerns, interoperability challenges, lack of knowledge, and incentives. Our very own Corrie Painter from our Patient Involvement and Engagement Working Group was a keynote speaker.
After a fulfilling decade organizing and attending ICGC workshops, I had learned that cancer is hundreds of diseases that rapidly evolve to sidestep drug therapy and that delivering the right drugs in the right sequence is essential to cancer control. One primary goal of ICGC was to make 50,000 tumour genomes freely available to researchers around the world. To speed the development of new treatments, pooling, and analyzing data from hundreds of thousands or millions of cancer patients is needed to provide a context for the interpretation of genetic sequences. To realize the full impact of precision medicine, genomic and clinical data must be interoperable across traditional jurisdictional boundaries.
No single country or institution can achieve the necessary scale and diversity alone. Data must be shared within an internationally federated, learning health system.
A high note of the symposium were outstanding presentations delivered by patients and advocates which broadened the lens of genomic research from consenting tumours and tissue samples to allow storage and access to refocus the patient contribution to facilitate global participation in a field that matters. To make sense of the massive amount of genomic information being generated to advance cancer treatment, patients want policies and systems in place now to help researchers investigate the safety and efficacy of new drugs, to share this data freely - risks notwithstanding - so that in aggregate, their legacy can benefit others.
One initiative moving this agenda forward is https://joincountmein.org/.
For more information visit: https://datascience.cancer.gov/news-events/events/symposium-personal-control-genomic-data-research
Ontario Institute for Cancer Research Canada