Disease Resistance and the Definition of Genetic Enhancement

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.

Responsible Translational Pathways for Germline Gene Editing?

“…Though current translational projects are mostly focused on prevention of monogenic disorders, there are other potential applications of GGE that have received some attention. The most prominent is the use of GGE to lower risk of communicable or non-communicable disease, such as editing to confer limited or full immunity to common pathogens or to lower risk of chronic conditions such as heart disease [66][67][68]. The experiments conducted by He Jiankui were of this type-as discussed in the "Introduction" section, He was attempting to disable the CCR5 gene and so confer some immunity to HIV infection.…”

Enhanced threat or therapeutic benefit? Risk and benefit perceptions of human gene editing by purpose and heritability of edits

“…How people evaluate risks can also be influenced by a hazard's 'personality' profile. Decades of psychometric research has identified key hazard characteristics important in shaping perceived risk (Slovic 1987;Sparks and Shepherd 1994;Finucane and Holup 2005). In particular, two main dimensions can drive risk perceptions: the extent to which a hazard is (1) unknown and (2) dreaded.…”

Human germline genome editing is illegal in Canada, but could it be desirable for some members of the rare disease community?

“…We engage this same values discourse when we consider whether to eradicate diseases such as polio or measles. In the Western world, we have had the privilege of deciding that some diseases have no redeeming value and are worth eradicating because they can do incredible damage to the human race (So et al 2017;Juengst et al 2018). Many rare disease patients may argue that their diseases are more than mere differences, that they are solely harmful in nature, and that they have no redeeming value.…”