Ethical, legal and social issues of gene editing

Stakeholders in genetics and genomics are currently faced with the possibility of using novel and potentially disruptive technologies such as CRISPR-Cas9 gene editing. Gene editing technology pushes genetics beyond diagnostic testing and enters into the realm of treatment. It allows to make changes in DNA at different stages of human life, for example in embryos, children and adults. Each of these uses of gene editing raises ethical, legal and social issues (ELSI). 

Many  current guidelines, laws, and much of the training offered for genetics and genomics do not properly address the (potential) uses of gene editing in the clinical or research contexts. This research project will help fill this gap by analysing the ELSI of gene editing in humans, including somatic as well as heritable editing in both the research and clinical contexts. Among others, we will study stakeholders’ responsibilities as well as public’s awareness and role in the gene editing debate.


The main aim is to analyse the ELSI related to gene editing in humans in order to provide guidance for a responsible management of this technology.



Swedish Research Council


January 2018-December 2021