Human Gene-Editing Study Launches


Powerful new gene-editing technologies, such as CRISPR-Cas9, hold great promise for advancing science and treating disease.  These new technologies also raise concerns and present complex challenges, however, particularly because of their potential to be used to make genetic changes that could be passed on to future generations, thereby modifying the human germline. The National Academy of Sciences and National Academy of Medicine began earlier this year an initiative on human gene editing to provide researchers, clinicians, policymakers, and societies around the world with a comprehensive understanding of human gene editing to help inform decision making about this research and its applications.


One component of the initiative is a new consensus study to examine the scientific underpinnings of human gene-editing technologies in biomedical research and medicine – including  potential human germline editing -- and the clinical, ethical, legal, and social implications.  A description of the study’s scope of work and the roster of the provisional committee appointed to conduct the study is available at The study committee will begin its information-gathering process by attending the summit on human gene editing being hosted by the National Academy of Sciences, National Academy of Medicine, Chinese Academy of Sciences, and the Royal Society – the science academy of the UK – on Dec. 1-3 in Washington, D.C. 


Over the course of the study, the committee will hold additional data-gathering meetings in the U.S. and abroad before releasing its findings and recommendations in a peer-reviewed report, to be completed in 2016. Issues to be examined include the state of the science of human gene-editing technologies; their potential for treating diseases; the efficacy and risks of human gene editing; the adequacy of current standards for human-subject research in addressing gene-editing research in humans, including germline editing; and principles that could help guide the development of oversight and governance for applications of human gene-editing research. The report will provide a framework based on underlying, fundamental principles that may be used by the U.S. or any nation considering guidelines for such research.


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