Creating ethics and governance resources for the Human Cell Atlas initiative

June 13, 2019

The Chan Zuckerberg Initiative (CZI), The Leona M. and Harry B. Helmsley Charitable Trust, and the Klarman Family Foundation announced $468,860 in collaborative funding to support ethical biomedical research and responsible data sharing for the Human Cell Atlas (HCA), an international effort to map all cells in the human body. The Centre of Genomics and Policy (CGP) at McGill University will help guide and inform the approach and governance of data sharing to assist participating investigators to collect and share data.

“The Human Cell Atlas is global in vision, content, and potential impact,” said Bartha Maria Knoppers, Professor at McGill University and Director of the CGP. “The human right to benefit from scientific advances means that HCA governance and policies must be principled, pragmatic, and practical to enable the scientific community to interact with patients.”

The HCA launched in 2016 with a goal of creating a reference catalog of all human cells, their proportions, their locations, and the interactions between them. The consortium, which comprises more than 1,300 scientists from over 800 institutions representing over 60 countries, seeks to profile at least 10 billion cells covering all tissues, organs, and systems. The full Atlas will be as diverse as possible, capturing a range of diseases, geographic locations, environments, and age groups. The HCA is committed to the highest ethical, legal, and regulatory standards.

Resulting data will be open and easily accessible to researchers and clinicians all over the world. Such a global collaboration requires guidance on best practices for respecting donor privacy while embracing open sharing of data to accelerate progress.

The CGP will work with the HCA to consider regulatory and ethical questions arising from research at this scale and to incorporate ethical considerations into policies. It will develop a framework for patient consent and guiding principles for HCA investigators, and will establish an ethics helpline to provide ongoing support related to these issues. The project will also address challenges such as evolving and potentially conflicting international regulations and guidance governing use of health information, exchange of samples, and additional complex, technical components.

McGill University has the full article