Association for Public Policy Analysis & Management

Human germline genome editing (HGGE), or the modification of human cells that could be passed along to future generations, is the most current technology in the dual-use research of concern debate. Potential benefits of this technology include new cancer treatments and cures for previously uncurable genetic diseases. However, potential risks include “turning off” the wrong genes inhibiting cell function, “turning on” (unintentionally) cancerous cells creating tumors, or developing two sets of genetically distinct cells in an individual resulting in dangerous genetic diseases. Standards for assessing these benefits and risks have not yet been set; indeed, there continues to be extensive debate over the appropriate use of HGGE technology.

This report proposes that the World Health Organization’s (WHO) Advisory Committee for Variola virus Research (ACVVR) could serve as a model for what questions should be used to start the benefits versus risks of HGGE discussion at an international level. The HGGE discussion must take place at the international level because of the potential for cascading cross-national and cross-generational consequences and because of the emergent nature of the HGGE field. While international agreements dating back to the 1940s provide the baseline principles for discussions on HGGE, certain topical areas require more immediate attention and discussion if there is to be an established international governing body overseeing all HGGE research. These areas include clinical applications of HGGE, objective risk measures for HGGE research, and social and ethical implications discussion of HGGE. The HGGE field does not have consensus on any of the three conditions, making it impossible currently to form an international governing body. More importantly, public consultation is vital to governing HGGE and establishing a research agenda for HGGE as the consequences of the technology will affect generations to come.