Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

SYMPOSIA: Gene Editing Technologies: Refining our understanding of obligations and key concept: Silence and Complicity in the Case of the First Gene-Edited Babies (1075)

G. Owen Schaefer 1 , Markus Labude 1 , Vicki Xafis 1
  1. Yong Loo Lin School of Medicine, National University of Singapore, SINGAPORE, Singapore

Soon after the 2018 case in China where the first babies were born with DNA deliberately edited by the now-notorious He Jiankui, it was revealed that several scientists in other countries had been informed of the experiment, and were even told when pregnancy was first achieved. However, the international community only became aware after the children were born. The backlash against He was immediate, with widespread condemnation of the experiment as unethical due to concerns about safety, efficacy, lack of necessity, consent and oversight. While at least one other pregnancy was reportedly ongoing, the study was shut down and He is under investigation.

This paper will explore a significant issue of professional ethics raised by this case: What responsibility do scientists and others have when learning of unethical experiments like these that occur at a separate institution in another country? If the international community were made aware sooner, the experiment might have been halted before it began, or at least the second pregnancy prevented. A WHO committee has proposed that all gene editing trials be registered, so proper monitoring can take place. However, such a system would likely take years to set up; in the meantime, there is not a clear reporting mechanism, other than tipping off international professional organizations or the news media. While such informal disclosures may have a salutary effect, there may be a need for more formal channels as the international scientific community deliberates over proposals to assist in monitoring applications of gene editing technologies.