Ethics of Human Genome Editing

Abstract

Advances in human genome editing, in particular the development of the clustered regularly interspaced palindromic repeats (CRISPR)/Cas9 method, have led to increasing concerns about the ethics of editing the human genome. In response, the US National Academy of Sciences and the National Academy of Medicine constituted a multidisciplinary, international committee to review the current status and make recommendations. I was a member of that committee, and the core of this review reflects the committee's conclusions. The committee's report, issued in February 2017, recommends the application of current ethical and regulatory standards for gene therapy to somatic (nonheritable) human genome editing. It also recommends allowing experimental germline genome editing to proceed if ( a) it is restricted to preventing transmission of a serious disease or condition, ( b) the edit is a modification to a common DNA sequence known not to be associated with disease, and ( c) the research is conducted under a stringent set of ethical and regulatory requirements. Crossing the so-called red line of germline genome editing raises important bioethical issues, most importantly, serious concern about the potential negative impact on individuals with disabilities. This review highlights some of the major ethical considerations in human genome editing in light of the report's recommendations.

Keywords: disability; genetic; germline (heritable) human genome editing; human genome editing; mutation; somatic (nonheritable) human genome editing.

Figure 1

Ethical formulations of human genome editing. (a) Traditional ethical formulation (adapted from and with permission) with treatment/enhancement dichotomy and somatic/germline dichotomy. (b) Modern reality formulation, in which disease prevention occupies a middle ground, melding at its borders into both treatment and enhancement.