A McGill-led project to develop an open-source, online resource for data governance has been awarded a grant totalling $558,424 USD from the Leona M. and Harry B. Helmsley Charitable Trust.
Development of the Data Governance Resource (DGR) will be led by Prof. Ma’n H. Zawati, Research Director of McGill’s Centre of Genomics and Policy, in the context of his role as co-chair of the Ethics Working Group of the Human Cell Atlas, a large international research initiative dedicated to mapping all cell types in the healthy body.
The DGR will contribute significantly to the international study of emerging ethical and legal issues related to the use of data gathered from patients. As well, it will address inequities that have had a disproportionate impact on low- and middle-income countries.
Ensuring patients consent to data use
The DGR will develop tools for data governance, such as adaptable Human Cell Atlas consent form templates in multiple languages, organized to address different data uses and populations. Additional resources will include data access and data transfer applications and ethics review templates.
Without these tools, scientific collaborations can be stalled, and patients ill-equipped to understand and consent to how their data will be used.
“Say, for example, I need to develop a consent form, and I am looking for a clause about privacy, specific to pediatric populations in the field of cancer research. DGR will be able to identify relevant clauses and provide them in multiple languages,” explained Zawati.
A capacity-building initiative for emerging economies
The project will also develop an international capacity-building initiative for emerging economies, including an online and in-person training program, and a podcast.
The DGR is designed to address an issue that was brought into stark relief during the COVID-19 pandemic. As governments and scientists scrambled to learn more about the novel virus, not all had what they needed to participate in international research initiatives.
“During the pandemic, the countries that had the most resources, and that had rich legislative traditions and data sharing policies in place, were the ones at an advantage,” says Zawati. “It’s not only about the expertise around the table, but also about the capacity or the lack of policy or tools to provide those experts with the resources to share information and be part of international research.”
Without access to data about the virus and its evolution, some health systems struggled to stay ahead of the global health crisis.
Zawati said he expects the project to create valuable training opportunities for students.
“Data governance is a field that is interdisciplinary,” he said. “This project will be relevant for students in the Faculty of Medicine and Health Sciences, but also for those in the Faculty of Law, and for those who are in the global health and ethics programs. There are many ways of creating synergy.”