The National Academies of Sciences, Engineering and Medicine
HUMAN GENE-EDITING INITIATIVE

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The International Commission on the Clinical Use of Human Germline Genome Editing has been convened by the U.S. National Academy of Medicine (NAM), the U.S. National Academy of Sciences (NAS), and the Royal Society of the U.K., with the participation of science and medical academies around the world, to develop a framework for scientists, clinicians, and regulatory authorities to consider when assessing potential clinical applications of human germline genome editing. The framework will identify a number of scientific, medical, and ethical requirements that should be considered, and could inform the development of a potential pathway from research to clinical use — if society concludes that heritable human genome editing applications are acceptable.
 

News 

Call for Evidence Released

The International Commission on the Clinical Use of Human Germline Genome Editing seeks information in response to its call for evidence.  View questions and submit your input or download PDF list of questions (163 KB). Responses are due by September 27.

Information submitted to the Commission will inform its deliberations as it develops a framework identifying scientific, medical, and ethical requirements to consider as part of a potential pathway from research to clinical use — if society concludes that heritable human genome editing applications are acceptable. The Commission’s report is expected to be released in 2020.

Several questions in the call invite broad input, while others are more technical in nature. You are encouraged to address those questions most relevant to your particular area(s) of expertise. When appropriate, providing citations and/or links to evidence in support of your responses is greatly appreciated.


Public Meetings

Meeting #1

The first meeting of the commission took place at the National Academy of Sciences building in Washington, D.C., on Aug. 13, 2019.

Video Recording (Closed captioning available by clicking on the "CC"):


Meeting Materials:

  1. Agenda (204 KB, PDF)
  2. Presentation of the Commission's Statement of Task - Dzau (135 KB, PDF)
  3. Presentation on World Health Organization Expert Advisory Committee - Hamburg (1.4 MB, PDF)
  4. Discussion of the State of Understanding of Genetics and Genetic Manipulation - Chakravarti (1.1 MB, PDF)
  5. Discussion of the State of Understanding of Genetics and Genetic Manipulation - Teichmann (5.2 MB, PDF)
  6. Discussion of the State of Understanding of Genetics and Genetic Manipulation - Cowan (2.1 MB, PDF)
  7. Discussion of the State of Understanding of Genetics and Genetic Manipulation - Adamson (1.4 MB, PDF)
  8. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing - Porteus (2.1 MB, PDF)
  9. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing - Macrae (3.0 MB, PDF)
  10. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing - Levine (4.0 MB, PDF)
  11. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing - Myer (1.3 MB, PDF)
  12. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing, Perspective from the US FDA - Gavin (344 KB, PDF)
  13. Translational Pathways from Laboratory to Therapy: Somatic Genome Editing, Perspectives from Potential Patient Communities - Norcross (1.2 MB, PDF)


Meeting #2

The second meeting of the commission will take place in London on Nov. 14-15, 2019.
 



Description

The commission is the latest action from the international science community to address issues around human genome editing. It follows the Second International Summit on Human Genome Editing — held last November in Hong Kong by NAS, NAM, the Royal Society, and the Academy of Sciences of Hong Kong. The topic became a focus of global attention when a scientist from China revealed at the summit that as a result of his research, twins had been born whose embryonic genomes had been edited. The scientist was widely condemned by the global scientific community for violating long-standing scientific principles and ethical norms.

The U.S. National Academies and the Royal Society are the secretariat of the commission, which includes representatives from 10 nations. Kay Davies, professor of genetics at the MDUK Oxford Neuromuscular Centre at the University of Oxford, England, and Richard Lifton, president of the Rockefeller University in New York City, are co-chairs of the commission. The commission will hold one additional meeting and an international workshop, and will also issue a call for public input to inform their work. A final report from the commission is expected to be issued in the spring of 2020.   

Resources


Email questions to geneediting@nas.edu.

Commission logos

At present, financial support for the Commission is being provided by the U.S. National Institutes of Health, The Rockefeller Foundation, the Royal Society of the U.K., the Cicerone Endowment Fund of the U.S. National Academy of Sciences, and the NAM Initiatives Fund of the U.S. National Academy of Medicine.