Accepted Paper:

Involving the Public in Decision-Making on Gene-Editing Research: At what Stage?  

Author:

Lonneke Poort (Eramus School of Law)

Paper short abstract:

In this paper, the role of the public in decision-making is scrutinized, leading to the central question of this paper: At what stage can and should the general public be involved in decision-making regarding controversial technologies such as CRISPR-CAS9?

Paper long abstract:

In April 2015, Nature revealed that Chinese researchers edited genomes of human embryos by use of CRISPR-CAS9 technique. This research caused huge controversy among scientists and policy-makers, challenging governments to respond. In general, most governments in Western societies reaffirmed the ban on gene-editing research. However, in February 2016, a researcher of the Francis Crick Institute in London was permitted to use the CRISPR-CAS9 technique in her research on human-embryo development. It was only then that the media paid extensive attention to its controversies causing awareness among the general public of the possibilities of this new technology.

In this paper, the role of the public in decision-making is scrutinized, leading to the central question of this paper: At what stage can and should the general public be involved in decision-making regarding controversial technologies such as CRISPR-CAS9? Following deliberative democracy theory and the argument that we need to bring in controversy to come to a better problem-definition (Poort 2013; Poort, Holmberg and Ideland, 2014) and to construct socially-robust knowledge (Jassanoff 2003), it can be argued that the general public should be involved at an early stage. That is to say, the public should be involved before approval of a request to use the technique. On the other hand, the UK-approval can function as a good starting-point for a broad participatory process to come to legitimate regulation on the matter. This paper explores both arguments to come to a general understanding of the role of the public in the various stages of decision-making regarding controversial technologies.

Panel T173
Gene Editing in Context: Challenges and Emerging Practices