The Ethics of Protecting 'CRISPR Babies': An International Roundtable Summary Report

The international roundtable was convened as a response to two leading bioethicists, Ruipeng Lei and Renzong Qiu who proposed a ‘special protection’ to be set up in China for the world’s first three genome-edited children, ’a new group of vulnerable population’. Describing the three children, Lulu, Nana and Amy, as the result of Jiankui He’s ‘genetic

mayhem’, Lei and Qiu proposed that a proactive protection plan was warranted by ‘moral obligations for future generations’.

The Centre for Global Science and Epistemic Justice (GSEJ) invited 10 panellists from the life sciences, bioethics, anthropology, sociology and patient and stakeholders’ groups to reflect on what constitutes the ethics of protecting genome-edited children and (future) individuals in comparable situations, and on how open and inclusive deliberation on this issue can take place in and with China. The event was held on 18th March 2022 on Zoom. It was chaired by GSEJ’s Director Dr Joy Zhang, who had a series of in-depth conversations with academics in China in the five weeks leading up to the roundtable to understand the evolving situation. Six other participants who were involved in these conversations were also invited to attend the meeting. The meeting followed Chatham House Rule. As of 5th April 2022, we’ve received individual approval from all participants, with the exception of one panellist, to publish their comments in the report. We’ve thus anonymised this panellist’s contribution.

We chose the format of a roundtable deliberately so as to give equal importance to all perspectives. The roundtable proceeded in alphabetical order with one exception. In recognition of the importance of patients’ perspectives, we invited Jay Johnson, who experienced long-term medical follow-up after gene therapy, to open up our discussion