Building an Ethical Foundation for the Human Cell Atlas
Three philanthropies team up to ensure policies and tools that will guide donor consent and data protection for the global research effort
For the 2018 Breakthrough of the Year, Science Magazine chose a new adaptation of single-cell sequencing — which is now being broadly used to see cellular differences and better understand the function of each individual cell at high resolution — for its potential to spur advances in basic research and medicine. With new technologies, scientists can now “track development of organisms and organs in stunning detail, cell by cell and through time.”
Using this emerging technology combined with innovative collaboration is the Human Cell Atlas (HCA), a global, scientist-led effort to create an open reference map of all cell types in the healthy human body. As a resource for health and disease research, the HCA has the potential to revolutionize our understanding of human cell biology and cellular mechanisms of disease.
Now, a collaborative effort of three philanthropies — the Chan Zuckerberg Initiative (CZI), the Helmsley Charitable Trust, and the Klarman Family Foundation — aims to bolster ethical biomedical research and responsible data sharing for the HCA.
The HCA community is already producing an incredible volume of diverse data, enabling scientists to better understand cell types, numbers, locations, and interactions. There are big questions around how best to share this unprecedented amount of data. Helping scientists conform to robust international ethical standards for research is of great importance to the HCA, as it includes scientists and funders from over 60 countries with differing laws and regulatory standards related to using human cells and tissues in research.
To navigate this complex landscape, CZI, Helmsley, and Klarman are co-funding a two-year grant to The Centre of Genomics and Policy (CGP), a leading international center for bioethics at McGill University. The CGP brings specialized expertise to the HCA and the capacity to provide ethics research, policies, tools, and support to the HCA’s diverse researchers, institutions, and research programs. It has been involved in other large efforts, such as the regulatory and ethics workstream of the Global Alliance for Genomics Health (GA4GH).
The CGP will work with HCA leadership to coordinate an Ethics Working Group and create tools and an ethics “help desk” to support the ethical contribution and handling of data. The CGP will develop shared ethics policies and tools while initiating ongoing discussions to guide future explorations related to donor consent and data protection. These resources will be free and open to any interested researcher — whether or not associated with the HCA.
This grant is a key step to proactively identify potential ethical issues and provide near-term practical tools for the community. Standardized and shared frameworks will help establish clear, strong, and harmonized protocols to protect patient privacy while embracing open data and accelerating progress.
This marks the first time funders have come together to support a central resource for the HCA community. Addressing these ethical issues transcends any single funder’s research efforts. We are excited to collaborate to ensure that human dignity, privacy, and engagement are carefully considered in scientific research and the HCA.
Jonah Cool, Science Program Officer, Chan Zuckerberg Initiative
Jonah Cool is a cell biologist and geneticist by training, and is currently a Science Program Officer at the Chan Zuckerberg Initiative, where he leads the organization’s efforts to support the international Human Cell Atlas consortium. He was an American Heart Association fellow while completing his PhD at Duke Medical Center, with a focus on the role of vascularization during cell differentiation and organ morphogenesis, and was subsequently a Ruth Kirchstein Fellow at the Salk Institute studying nuclear organization during stem cell differentiation. Dr. Cool previously worked in intellectual property litigation, as well as ran an industry research group working toward therapeutic application of 3D bioprinted human tissue. He has a deep love of cell biology and, in particular, the origins of cellular heterogeneity and how diverse cells assemble into complex tissues.
Dr. Garabet Yeretssian, Crohn’s Disease Program Director, Helmsley Charitable Trust
Dr. Garabet Yeretssian is the Program Director for the Helmsley Charitable Trust’s Crohn’s Disease Program, which supports impactful ideas and mobilizes a global community committed to improving the lives of Crohn’s disease patients and advancing precision medicine.
Prior to joining Helmsley, Garabet was an assistant professor in the Immunology Institute at the Icahn School of Medicine at Mount Sinai where he led a research team investigating the implication of innate immune mechanisms in IBD, Crohn’s disease, colorectal cancer, and other gastrointestinal disorders. Previously, he was a postdoctoral fellow and later on an associate researcher at McGill University, studying host-microbe interactions at mucosal surfaces.
Garabet earned a PhD in Biotechnology, Cell and Molecular Biology from the University of Nantes, France, and an MSc degree in Biochemistry, Cell and Molecular Biology from the University of Burgundy. Earlier, he also completed an MSc degree in Biological Sciences at the Lebanese University in Beirut.
Kim McCabe, Executive Director, Klarman Family Foundation
Kim serves as Executive Director of The Klarman Family Foundation. The Foundation seeks to identify areas of unmet need and to advance solutions to addressing them. Underlying all of the Foundation’s work is a passionate belief in the promise and importance of creative thinking, strategic leadership and strong organizations to help bring about change. As a way to learn and create greater impact, the Foundation values acting in partnership with other funders. Its work spans regionally, nationally and internationally and focuses on advancing understanding of the biological basis of health and illness; supporting the Jewish community and Israel; expanding access to vital services and enrichment opportunities in Greater Boston; and ensuring a healthy democracy.
Prior to joining the Foundation, Kim served as Executive Director of the Center for Nonprofit Management at Stonehill College, Executive Director of the Harvard Eating Disorders Center, and Vice President of Community Investments at United Way of Massachusetts Bay. She was also a program and strategy consultant with clients including the Hyams Foundation, the Black Church Capacity Building project and the Neighborhood House Charter School. Kim began her career as a consultant in the private sector working with institutional investors. Kim is a graduate of Harvard and Radcliffe Colleges.