Abstract

Since its discovery in 2012, CRISPR-Cas9 represents a promising technology for disease prevention and therapy in humans through genome editing and in animals for food and biotechnology purposes. The longstanding discussion of the ethics of genetic modification remains vivid in the genome editing context, especially regarding human germline genome modification and the impact on the environment and on human and animal health.

We here present part of the results and respective rationale behind a systematic review of studies regarding general public perception of gene editing in humans and non-human animals after the advent of CRISPR. Analysis of representative surveys conducted with the general public about gene editing in non-human animals show when comparing purpose, medical applications are preferred over agricultural (food). Several surveys address animal welfare and this is a concern among respondents. In human applications, there is a preference for somatic genetic modification over germline. However, both are accepted if the purpose is to overcome that individuals may present or will likely present in the future genetic diseases that could be fatal. But while somatic gene editing is approved largely for therapy in all countries surveyed, germline gene editing is met with ambivalence. Furthermore, genome editing for enhancement purposes is not approved widely, with greater rejection if in the form of germline editing. In general, awareness and knowledge about genetic modification is usually correlated with its approval and these levels are higher among citizens in some countries than in others. Importantly, a critical appraisal of questionnaires shows that post-CRISPR surveys administered to the public have an overall medium quality by being representative with authors assessing validity and reporting on bias. Reliability assessment, sample weighing and adherence to ethics procedures such as providing informed consent during recruitment are insufficiently reported. For future research, standardized surveys performed across a number of countries would be valuable for mapping and comparing public attitudes toward genome editing worldwide. Finally, new issues brought up to light by scholars in bioethics like access to technologies, eugenics, funding of genome editing technologies and social justice should integrate future surveys when consulting public opinion with the aim to provide relevant inputs to policy makers when drafting guidelines of genome editing implementation in human and non-human applications.