Human Genome Editing: Science, Ethics, and Governance

Genome editing is a powerful new tool for making precise alterations to an organism’s genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions.

Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.

• Front Matter
• Summary
• 1 Introduction
• 2 Oversight of Human Genome Editing and Overarching Principles for Governance
• 3 Basic Research Using Genome Editing
• 4 Somatic Genome Editing
• 5 Heritable Genome Editing
• 6 Enhancement
• 7 Public Engagement
• 8 Summary of Principles and Recommendations
• References
• Appendix A: The Basic Science of Genome Editing
• Appendix B: International Research Oversight and Regulations
• Appendix C: Data Sources and Methods
• Appendix D: Committee Member Biographies
• Appendix E: Glossary