Second International Summit on Human Genome Editing: Continuing the Global Discussion Proceedings of a Workshop–in Brief (2019) / Chapter Skim
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Second International Summit on Human Genome Editing: Continuing the Global Discussion: Proceedings of a Workshop - in Brief
Second International Summit on Human Genome Editing: Continuing the Global Discussion: Proceedings of a Workshop - in Brief
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Over the two-and-a-half-day event, topics including the potential benefits and risks of human genome editing, ethical and cultural perspectives, regulatory and policy considerations, and public outreach and engagement efforts were explored. In addition to the hundreds present at the University of Hong Kong, more than 80,000 unique visitors from over 190 countries and jurisdictions viewed the summit's live webcast, and more than 1.8 million viewers watched a special video stream provided by Beijing News.1, 2 The second international summit follows the First International Summit on Human Gene Editing, which was held in Washington, DC, on December 1-3, 2015.3 In a statement released at the end of the 2015 summit, the organizing committee of the 2015 summit observed that intensive basic and preclinical research on genome editing was clearly needed and that such research should be subject to appropriate legal and ethical rules and oversight.
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David Baltimore, Chair, Summit Organizing Committee; Dr. Lap-Chee Tsui, President, Academy of Sciences of Hong Kong; and Dr.
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Its flaws included "an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review, and conduct of the clinical procedures." ADVANCES IN THE SCIENCE OF HUMAN GENOME EDITING As many speakers at the summit observed, the science of genome editing has advanced rapidly since the first summit. The science is based on increasing knowledge of enzymes that interact with DNA, and this has resulted in many potential applications in research, health care, agriculture, and other fields, said Jennifer Doudna (University of California, Berkeley)
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A 2016 interim report from an expert panel convened by the Cabinet Office of the government of Japan allowed the use of gene-editing tools on spare embryos for the improvement of assisted reproductive technologies, but it prohibited the creation of human embryos for research, some categories of research on embryos, and clinical applications of germline genome editing.4 Margaret Sleeboom-Faulkner (University of Sussex) called attention to the need to broaden the orientation of bioethics to include more expansive notions of health, nature, and embodied knowledge.
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But guidance is needed regarding appropriate oversight and ethically acceptable modes of pursuing this research, she continued, and oversight structures should be in place prior to any attempts to conduct this research for the purposes of human reproduction. In a related panel on research ethics, five speakers elaborated on some of the ethical considerations underlying genome editing research, and in particular germline genome editing, and the embodiment of those considerations in regulation.
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After one public meeting, a third of participants said that they had changed their opinions about human genome engineering, and the group arrived at a consensus that "the most important thing is to have lots of public discussion on this issue." In the final session of the summit, the 14-member organizing committee released a concluding statement (see Box 1) and the presidents of the U.S.
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National Academy of Medicine organized the Second International Summit on Human Genome Editing in Hong Kong to assess the evolving scientific landscape, possible clinical applications, and attendant societal reactions to human genome editing. While we, the organizing committee of the second summit, applaud the rapid advance of somatic gene editing into clinical trials, we continue to believe that proceeding with any clinical use of germline editing remains irresponsible at this time.
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AN ONGOING INTERNATIONAL FORUM The organizing committee calls for an ongoing international forum to foster broad public dialogue, develop strategies for increasing equitable access to meet the needs of underserved populations, speed the development of regulatory science, provide a clearinghouse for information about governance options, contribute to the development of common regulatory standards, and enhance coordination of research and clinical applications through an international registry of planned and ongoing experiments. In addition to the establishment of an international forum, the organizing committee calls upon national academies and learned societies of science and medicine around the world to continue the practice of holding international summits to review clinical uses of genome editing, to gather diverse perspectives, to inform decisions by policymakers, to formulate recommendations and guidelines, and to promote coordination among nations and jurisdictions.
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We share the organizing committee's deep concerns that the researcher did not follow guidelines such as those recommended in the 2017 National Academies report, or other international norms of responsible scientific conduct. We are committed to continuing to provide leadership on the responsible pursuit of human genome editing research and applications, and to work together with our colleagues at other Academies around the world to host additional forums and to develop future guidelines.
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Daley, Boston Children's Hospital and Dana-Farber Cancer Institute; Jennifer A Doudna, University of California, Berkeley; Kazuto Kato, Osaka University; Jin-Soo Kim, Seoul National University; Robin Lovell-Badge, The Francis Crick Institute; Jennifer Merchant, Universite de Paris II; Indira Nath, All India Institute of Medical Sciences; Duanqing Pei, Guangzhou Institutes of Biomedicine and Health, Chinese Academy of Sciences; Matthew Porteus, Stanford University; John Skehel, The Francis Crick Institute; Patrick Tam, National Health and Medical Research Council of Australia; Xiaomei Zhai, Chinese Academy of Medical Sciences and Peking Union Medical College.
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