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THE NATIONAL ACADEMIES PRESS This PDF is available at http://nap.edu/25665 SHARE Heritable Human Genome Editing (2020) DETAILS 224 pages | 6 x 9 | PAPERBACK ISBN 978-0-309-67113-2 | DOI 10.17226/25665 CONTRIBUTORS GET THIS BOOK International Commission on the Clinical Use of Human Germline Genome Editing; National Academy of Medicine; National Academy of Sciences; The Royal Society FIND RELATED TITLES SUGGESTED CITATION National Academy of Sciences 2020. Heritable Human Genome Editing. Washington, DC: The National Academies Press. https://doi.org/10.17226/25665. Visit the National Academies Press at NAP.edu and login or register to get: – Access to free PDF downloads of thousands of scientific reports – 10% off the price of print titles – Email or social media notifications of new titles related to your interests – Special offers and discounts Distribution, posting, or copying of this PDF is strictly prohibited without written permission of the National Academies Press. (Request Permission) Unless otherwise indicated, all materials in this PDF are copyrighted by the National Academy of Sciences. Copyright © National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY Heritable Human Genome Editing International Commission on the Clinical Use of Human Germline Genome Editing A Consensus Study Report of the and This prepublication version of Heritable Human Genome Editing has been provided to the public to facilitate timely access to the report. Although the substance of the report is final, editorial changes may be made throughout the text and citations will be checked prior to publication. Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by Contract No. HHSN263201800029I / Order No. 75N98019F00852 from the U.S. National Institutes of Health, Grant No. 2019 HTH 009 from the Rockefeller Foundation, and Grant 218375/Z/19/Z from the Wellcome Trust, with additional support from 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. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25665 Library of Congress Control Number: xxxxxxxx Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2020 by the National Academy of Sciences and the Royal Society. All rights reserved. This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0). To view a copy of the license, visit https://creativecommons.org/licenses/by-nc-nd/4.0/. Printed in the United States of America Suggested citation: National Academy of Medicine, National Academy of Sciences, and the Royal Society. 2020. Heritable Human Genome Editing. Washington, DC: The National Academies Press. doi: 10.17226/25665. Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS INTERNATIONAL COMMISSION ON THE CLINICAL USE OF HUMAN GERMLINE GENOME EDITING KAY E. DAVIES, D.Phil. (Co-Chair), Professor of Genetics, University of Oxford, U.K. RICHARD P. LIFTON, M.D., Ph.D. (Co-Chair), President, The Rockefeller University, USA HIDENORI AKUTSU, M.D., Ph.D., Director, Department of Reproductive Medicine, National Center for Child Health and Development, Japan ROBERT CALIFF, M.D., Verily Life Sciences, USA DANA CARROLL, Ph.D., Distinguished Professor, University of Utah School of Medicine, USA SUSAN GOLOMBOK, Ph.D., Professor of Family Research and Director of the Centre for Family Research, University of Cambridge, U.K. ANDY GREENFIELD, Ph.D., Programme Leader, MRC Harwell Institute, U.K. RAHMAN A. JAMAL, M.D., Ph.D., Professor of Paediatric Haematology, Oncology and Molecular Biology, Universiti Kebangsaan Malaysia JEFFREY KAHN, Ph.D., M.P.H., Andreas C. Dracopoulos Director, Berman Institute of Bioethics, Johns Hopkins University, USA BARTHA MARIA KNOPPERS, JD, Ph.D., Director of the Centre of Genomics and Policy and Canada Research Chair in Law and Medicine, McGill University, Canada ERIC S. LANDER, Ph.D., President and Founding Director, Broad Institute of MIT and Harvard University, USA JINSONG LI, Ph.D., Professor, State Key Laboratory of Cell Biology, Shanghai Institute of Biochemistry and Cell Biology, Center for Excellence in Molecular Cell Science, Chinese Academy of Sciences, China MICHÈLE RAMSAY, Ph.D., Director and Research Chair, Sydney Brenner Institute for Molecular Bioscience, University of the Witwatersrand, South Africa JULIE STEFFANN, M.D., Ph.D., Professor of Genetics and Head of the Molecular Genetics Department, Paris University and Necker-Enfants Malades Hospital, France B.K. THELMA, Ph.D., Professor, Department of Genetics, University of Delhi, India DOUG TURNBULL, M.D., Ph.D., Director, Wellcome Trust Centre for Mitochondrial Research and Professor of Neurology, Newcastle University, U.K. HAOYI WANG, Ph.D., Professor, State Key Laboratory of Stem Cell and Reproductive Biology, Institute of Zoology, Institute for Stem Cell and Regeneration, Chinese Academy of Sciences, China ANNA WEDELL, M.D., Ph.D., Professor and Head of Clinic, Centre for Inherited Metabolic Diseases, Karolinska Institute and Karolinska University Hospital, Sweden Study Staff KATHERINE W. BOWMAN, Senior Program Officer (Commission Co-Director), NAM/NAS JONNY HAZELL, Senior Policy Adviser (Commission Co-Director), The Royal Society MEGHAN ANGE-STARK, Associate Program Officer, NAM/NAS (from Januray 2020) SARAH BEACHY, Senior Program Officer, NAM/NAS CONNIE BURDGE, Policy Adviser, The Royal Society DEBBIE HOWES, Personal Assistant and Events Coordinator, The Royal Society STEVEN KENDALL, Program Officer, NAM/NAS DAVID KUNTIN, Intern (April-July 2019), The Royal Society DOMINIC LOBUGLIO, Senior Program Assistant, NAM/NAS (from November 2019) iii Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS ROB QUINLAN, Intern (July-September 2019), The Royal Society FLANNERY WASSON, Senior Program Assistant, NAM/NAS (until November 2019) ISABEL WILKINSON, Intern (September-December 2019), The Royal Society EMMA WOODS, Head of Policy, The Royal Society Consultants STEVE OLSON, Writer iv Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS INTERNATIONAL OVERSIGHT BOARD VICTOR DZAU, M.D. (Co-Chair), President, National Academy of Medicine JOHN SKEHEL, Ph.D. (Co-Chair), Former Vice-President and Biological Secretary, The Royal Society ARNAUD BERNAERT, MBA, Head of Shaping the Future of Health and Healthcare, World Economic Forum CARLOS HENRIQUE BRITO DE CRUZ, D.Sc., Scientific Director, São Paulo Research Foundation and Professor, University of Campinas SUZANNE CORY, Ph.D., Professor, Walter and Eliza Hall Institute of Medical Research and Past President, Australian Academy of Science FELIX DAPARE DAKORA, Ph.D., South African Research Chair in Agrochemurgy and Plant Symbioses, Tshwane University of Technology and President, African Academy of Sciences JEREMY FARRAR, Ph.D., Director, The Wellcome Trust JIM KIM, M.D., Ph.D., Vice Chairman and Partner, Global Infrastructure Partners MARCIA MCNUTT, Ph.D., President, National Academy of Sciences QI ZHOU, Ph.D., Professor and Deputy Secretary-General, Chinese Academy of Sciences VENKATRAMAN RAMAKRISHNAN, Ph.D., President, The Royal Society K. VIJAY RAGHAVAN, Ph.D., Principal Scientific Adviser, Government of India JANET ROSSANT, Ph.D., President and Scientific Director, The Gairdner Foundation and Professor, University of Toronto RAJIV SHAH, M.D., President, The Rockefeller Foundation IOB Staff ANNE-MARIE MAZZA, Senior Director, Committee on Science, Technology, and Law, NAM/NAS v Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS Special Acknowledgments We are immensely grateful for the dedication and talent brought to bear on the work of this Commission by our fellow commissioners, the exceptional staff members of the NAS and the Royal Society, the external reviewers and monitors, and the many scientists, clinicians, and people with inherited disorders who have generously lent their time and insight to this project. All have far exceeded what we ever could have asked of them. Finally, we thank the members of the International Oversight Board for this study, who ensured that our report underwent a rigorous process of information gathering and external review prior to publication. With gratitude and admiration, Kay E. Davies, D.Phil. (co-chair) Richard P. Lifton, M.D., Ph.D. (co-chair) vi Copyright National Academy of Sciences. All rights reserved. Heritable Human Genome Editing PREPUBLICATION COPY | UNCORRECTED PROOFS Foreword The appointment of this Commission and the beginning of its deliberations occurred
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