A year out from the Summit, the events focused on the key topics of the Summit’s agenda, including discussion of the recent reports from the International Commission on the Clinical use of Heritable Human Genome Editing and the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. Presentations were followed by panel discussions, with some presentations having been pre-recorded, and available to watch separately.
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7 March : Looking Ahead to the Science
- Yujia Cai, Shanghai JiaoTong University
- Amander Clark, University of California, Los Angeles
- Jennifer Doudna, University of California, Berkeley
- Julian Gillmore, University College London
- Chair: Robin Lovell-Badge, The Francis Crick Institute
Presentations discussed the state of the science and recent developments in somatic editing, including delivery mechanisms for genome editing in vivo, and germline editing, particularly developments in producing edited gametes. The following panel session discussed scientific barriers to securing the benefits of genome editing.
8 March : Looking Ahead to the Equity & Access
- Tania Bubela, Simon Fraser University
- Arafa Salim Said, Sickle Cell Disease Patients Community of Tanzania
- Adrian Towse, UK Office of Health Economics
- Ambroise Wonkam, Johns Hopkins University School of Medicine
- Chairs: Javier Guzman, Center for Global Development & Chris McCabe, Institute of Health Economics
This event discussed the health system and price barriers that must be addressed to ensure future access to innovative gene-editing therapies, including potential policy options for governments, industry, multilaterals, and other global health stakeholders. The first half of this session focused on health system barriers to access new somatic genome editing technologies, particularly in low- and middle- income countries. Revolutionary gene-editing therapies for the treatment of sickle cell disease have achieved exciting results in clinical trials and can potentially cure this chronic condition that affects around 6 million people worldwide, with sub-Saharan Africa accounting for three quarters of these cases. However, unless policy action is taken, these new technologies are likely to be unavailable, unaffordable, inaccessible and unacceptable for patients living in low-resource settings. The second half of this session focused on different ways to address price as a barrier to access in higher-income countries, both within the current research and development framework and beyond.
9 March : Looking Ahead to the Governance
- Daima Bukini, Muhimbili University of Health and Allied Sciences
- Alena Buyx, German Ethics Council & Technical University of Munich
- Andy Greenfield, University of Oxford
- Katie Hasson, Center for Genetics and Society
- Katherine Littler, World Health Organization
- Laurence Lwoff, Council of Europe
- Piers Millett, iGEM Foundation, Biosecure & University of Oxford
- Leigh Turner, University of California, Irvine
- Chairs: Françoise Baylis, Dalhousie University & Alta Charo, University of Wisconsin-Madison
Presentations included research on current regulatory frameworks and challenges for governance of somatic and heritable editing – if heritable genome editing is deemed safe and acceptable. The session also focused on the governance recommendations from the International Commission on the Clinical Use of Human Germline Genome Editing and the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing reports, and how these could be operationalised within nations and internationally.