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: Two challenges for the requirement of ‘societal consensus’ (1076)

Markus Labude 1 , G. Owen Schaefer 1 , Vicki Xafis 1 , Wei Leong Chew 2 , Alexandre Erler 3 , Tamra M Lysaght 1 , Poh San Lai 4
  1. Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
  2. Genome Institute of Singapore, Agency for Science, Technology and Research, Singapore
  3. CUHK Centre for Bioethics,, The Chinese University of Hong Kong, Hong Kong, Hong Kong S.A.R.
  4. Dept of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore

Over the past few years, a large number of reports, statements, and commentaries have specified the conditions under which heritable genome editing should be permissible in humans. Several of these documents state that there needs to be ‘societal consensus’ for any germline intervention before that intervention can go ahead. Call this the ‘SC requirement’. In this paper, we raise two challenges that arise when the SC requirement is applied outside the context of wealthy democracies. The first challenge is that the SC requirement may put resource-challenged countries at a disadvantage. Defenders of the SC requirement tend to assume that the consensus is valid only if it arises from a certain type of deliberation, involving public consultation with broad civil participation. Yet, conducting such public consultation is a resource-expensive exercise, especially for countries with little existing capacity for engaging the public in robust bioethical debate. The second challenge is that the SC requirement may be an unrealistic requirement for countries that make societal or policy  decisions through governing authorities without open consultation. Would it be morally permissible for such countries to engage in clinical applications of germline editing even in the absence of democratically reached societal consensus? If the answer to this is ‘no’, then this would preclude a large number of countries from reaching the threshold for morally acceptable germline editing.