September 07, 2023
Genomic research and innovation are rapidly advancing fields with enormous potential to revolutionize healthcare, agriculture, and environmental conservation. At the forefront of these advancements is the ability to harness the power of big data. Genome BC aims to unlock the full potential of genomics and drive economic, social, and environmental benefits. Genome BC’s data-driven approach focuses on three key pillars.
First, the prioritization of data collection, management and integration to unlock the full potential of genomics, driving economic, social and environmental benefits. Second, fostering collaboration and engagement with stakeholders, ensuring effective data governance and facilitating data exploration beyond individual projects. And finally, maximizing the impact of genomics research by supporting the development of tools and technologies streamlining access to data and promoting responsible data management and stewardship.
Genome BC’s data vision is aligned with the principles developed by the Organisation for Economic Cooperation and Development (OECD). Genome BC recognizes that publicly funded data are public goods that should be openly shared. Acknowledging that datasets resulting from Genome BC funded projects often have value beyond their original purpose, we actively promote interdisciplinary and translational collaboration, engaging multiple stakeholders, including funders, data providers, innovators, researchers and end-users.
Effective data governance is a priority for Genome BC, advocating for data sharing and establishing protocols for secondary data access. By doing so, Genome BC aims to foster a collaborative ecosystem that facilitates data exploration and utilization beyond individual projects.
Genome BC aims to identify the barriers and strategies necessary to achieve integration by linking health data, biobanks, genomics, and other platforms. One of Genome BC’s key initiatives is developing and implementing data science activities within the British Columbia research ecosystem. This involves organizing working groups with key participants to create a jurisdictional roadmap for a comprehensive genomic ecosystem aligned with the Pan Canadian Health Data Strategy. This key initiative aims to identify the barriers and strategies necessary to accelerate by linking health data, biobanks, genomics and other platforms.
Collaboration and coordination are also critical aspects of Genome BC’s data strategy. The organization actively engages with provincial, federal, and international funding agencies to promote data sharing, harmonize policies, and maximize the global impact of genomics research.
Genome BC also invests in developing tools and technologies that enable efficient data collection, storage, management, analysis and linkage. A notable example is the launch of the Data Access, Integration and Analysis Program (DAIA) in June 2021, utilizing PHC Ventures’ Integrated Health Informatics Datalab (IHID). This secure environment enables the integration of clinical, imaging and genomics data as well as provides researchers with analytical tools. Genome BC allocated $1M to fund four projects that aim to test the IHID system and enable researchers to provide valuable feedback for improvement. These projects have a significant focus on improving patient care, such as:
- predicting fibrotic interstitial lung disease progression by integrating environmental and genomic risk factors,
- utilizing genetics to assess cardiovascular disease risk and guide treatment,
- identifying molecular surrogates for optimal immunosuppression in heart transplantation
- developing a blood test to assess the risk of heart failure in hereditary hypertrophic cardiomyopathy patients.
Embracing responsible data management and stewardship, Genome BC adheres to principles such as the FAIR Guiding Principles[1], the First Nations Principles of OCAP™[2], and the CARE[3] Principles for Indigenous Data Governance. Genome BC’s Data Science team organizes the Data Literacy webinar series to highlight these principles as well as to bring national and international experts together to help deepen our understanding of different data related initiatives, standards and resources.
Genome BC actively bridges the gap between research, healthcare, and environmental applications by supporting robust data governance models and harnessing the power of machine learning approaches. In doing so, we actively engage in collaborative partnerships with the private sector and industry experts to drive innovation, optimize data utilization and accelerate solutions and strategies that meet diverse user needs.
Genome BC continues to actively engage with policymakers to encourage incorporating data, knowledge and know-how into decision support tools. The organization seeks to inform policy development and drive informed decision-making processes by providing evidence based insights.
As a cross cutting pillar of Genome BC’s research and innovation mandate, this data strategy is vital in empowering the organization’s pursuit of advancements in the health, agrifoods, and natural resources sectors. By championing data driven approaches and fostering collaboration, Genome BC strives to unlock the transformative potential of genomics and create a better future for British Columbia and beyond.”
[1] FAIR Guiding Principles are findability, accessibility, interoperability and reusability.
[2] The First Nations Principles of OCAP are ownership, control, access and possession.
[3] The CARE Principles for Indigenous Data Governance are collective benefit, authority of control, responsibility and ethics.
This article appears in Genome BC’s 2022/23 Annual Report. View the whole report here.
