Is Enhancement the Price of Prevention in Human Gene Editing?

Abstract

New gene-editing tools challenge conventional policy proscriptions of research aimed at either human germline gene editing or human enhancement by potentially lowering technical barriers to both kinds of intervention. Some recent gene-editing reports have begun to take up the prospect of germline editing, but most experts are in broad agreement that research should prioritize medical applications over attempts to enhance human traits. However, there is little consensus about what counts as human enhancement in this context, or how to deal with the issues it flags. Moreover, several influential reports interpret medical applications to include disease prevention as well as treatment as a goal for gene-editing research. This challenges the current policy consensus because using gene editing to prevent disease would incidentally facilitate human enhancement applications in a variety of ways. If such research efforts are penalized by policy concerns about enhancement, then their preventive health benefits could be lost. To avoid being caught off guard by such challenges, science policy makers will need to think more carefully about what ''prevention'' might mean in the gene-editing context, and develop research governance that can anticipate and address the human enhancement concerns it will raise. To accomplish the latter, the scope of policy making will need to expand from its narrow focus on human clinical trials to engage with basic researchers driving the translational pipeline toward preventive gene editing and the science policy makers who have to address its ''off-label'' uses.

The ‘serious’ factor in germline modification

“…Framing scientific progress within a novel human rights-based approach would ‘reorient our conversation from policing science to governing society and would shift our focus from avoiding risks to protecting opportunities’ (p. 21) 66. Indeed, this would foster advancements in our ability to treat and prevent disease, while remaining mindful of the need to establish anticipatory governance that provides the necessary flexibility to frame the preventive or therapeutic applications but also adapt to potentially legitimate ‘off-label’ ones 67. Finally, addressing the notion of ‘serious’ could also profit from future discussion of another human right, that of ‘future generations’, iv as the need for intergenerational monitoring will undoubtedly lead to safety, privacy, and consent issues for children not yet born 51…”

Reflections about the Molecular Tool That Could Change the Course of Human History: Genome Editing

“…Furthermore, embryo editing in clinical treatments could accidentally cause human enhancement in several ways. For example, it has been shown that the overexpression of genes to prevent neurological diseases can improve the cognitive potential of mouses and even increase the life span by up to 30% (40). Before starting to write the political outlines, this type of pleiotropic effects must be considered from all spheres of society.…”

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 – 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.…”