ASHG Joins Efforts Responding to Genome Editing, Exploring Need for Standards

March 2019

As the world’s largest organization for genetics and genomics research, the Society is an important voice on the application of new genetic technologies, and it has become more important than ever given the pace of discovery and application. So it was deeply concerning when news from November’s Second international Summit on Human Genome Editing in Hong Kong indicated that a researcher had performed genome editing on the embryos of twins. ASHG is taking steps to engage globally and plan an event for the 2019 Annual Meeting.

Back in November following the announcement, ASHG issued a strong press statement reaffirming its 2017 statement on germline gene editing (cosigned by 10 international genetics organizations) and expressed deep concern that such research is premature. Yet the press statement also conveyed the important potential the technology holds and the importance of dialogue to address its misuse and responsible research. As then-president David Nelson, PhD, noted:

“It is premature to perform germline genome editing that culminates in human pregnancy. Important scientific, ethical, and policy discussions are taking place, in a variety of venues within and outside ASHG, but many vital questions remain unanswered. ASHG remains committed to the power and progress of human genetics to improve health. We see great promise for genome editing technology and the advances it will bring.”

David further noted that ASHG has taken a leadership position in drawing consensus among genetics research professionals to ensure that this potential is realized in an appropriate and responsible way. The statement was included in coverage in major news outlets nationwide, including the Los Angeles Times and the Houston Chronicle.

Additionally, ASHG President Les Biesecker, MD, and Dr. Nelson have engaged Victor Dzau, MD, president of the National Academy of Medicine, to explore how ASHG can be helpful and engage with them on the topic and our actively engage our own membership in this dialogue. The meeting followed a Science magazine editorial by Dr. Dzau; Marcia McNutt, PhD, president of the National Academy of Sciences; and Chunli Bai, PhD, president of the Chinese Academy of Sciences, identifying the need for experts and stakeholders to convene to craft criteria and standards to be met before germline genome editing be deemed permissible.

ASHG is now active with NASEM staff about their announced commitment to partner with other scientific academies and societies from across the globe to establish a new international commission on germline genome editing. Their effort is expected to produce a consensus report on proposed action and engage with the World Health Organization (WHO), which has constructed a related panel. NASEM’s work is expected to run throughout 2019 with the ultimate completion of a report on key factors to consider regarding the medical suitability of its use and potential governance and regulatory structures, topics that were also explored in ASHG’s 2017 statement. ASHG is in discussion with the group, offering to connect NASEM with ASHG members with relevant expertise and facilitating input from the genetics community.

To that end, ASHG is also planning an event for the 2019 Annual Meeting to engage our members in this broader dialogue. We encourage members to look for additional information on activities; content and speakers will be finalized in coming months as we continue to engage with the National Academies and learn more about WHO activities.

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