Abstract

Recent gene editing experiments carried out in human embryos have raised the question of whether interventions like the introduction of a CCR5-Δ32 deletion, which could provide heritable resistance to HIV infection, ought to be considered enhancements. Many authors have used the term “enhancement” in different ways, some based on patients’ biomedical outcomes and others on their social context. These classifications are often considered overly imprecise. Nevertheless, the concept of “enhancement” could affect the ways in which these applications are regulated in different jurisdictions, the availability of coverage by insurers or public health care, and the force of public opinion in shaping future policy on gene editing. In order to ethically situate resistance to communicable disease with reference to other techniques, this article provides an overview of its similarities and differences with disease gene therapy in embryos, gene therapy in consenting adults, and vaccination. In discussing key ethical features of CCR5-Δ32 deletion (including its frequency in various populations, biological mechanism, benefits for individuals, and use in previous clinical trials) we offer some potential guideposts for the continuing discussion on how to classify “enhancements” in the age of CRISPR gene editing.

Highlights

  • Recent scientific advances have heightened the debate over using “gene-editing” technologies like the CRISPR/Cas9 system (Clustered Regularly Interspaced Short Palindromic Repeats; CRISPRassociated protein 9) to make heritable modifications to the human genome

  • These two experiments have raised the novel question of whether gene editing aimed at providing resistance to communicable diseases (RCD) ought to be considered similar to therapeutic editing from an ethical perspective, or whether it ought to be classified as a form of “enhancement.” In this article, we examine the reasons why this distinction might be important to the uptake of gene editing, and provide examples of biotechnologies that have raised similar ethical concerns

  • Even if gene editing to provide RCD in human embryos is eventually permitted in some jurisdictions, access to such interventions may be restricted by insurers or public health care systems unwilling to subsidize costly “enhancements” (Buchanan et al, 2000)

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Summary

Introduction

Recent scientific advances have heightened the debate over using “gene-editing” technologies like the CRISPR/Cas9 system (Clustered Regularly Interspaced Short Palindromic Repeats; CRISPRassociated protein 9) to make heritable modifications to the human genome. Treatment and enhancement are often defined in opposition to one another in the context of genetic modification (Committee on Human Gene Editing, and National Academies of Sciences, Engineering, and Medicine, 2017).

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