Session: Inequity at the Beginning and End of Life
Prenatal Gene Editing: The Path to a Values-Based Governance Framework
Thursday, September 19, 2024
9:15 AM – 10:15 AM CT
Location: Midway 5 (First Floor)
Abstract: Prenatal gene editing (PGE) will soon be introduced in the research setting, paving the way for a translational pathway, thus highlighting the need for values-based governance to govern it. This is even more urgent considering that reproductive technologies are one of the most variably governed areas of medicine, resulting unequal access and substantial uptake in reproductive tourism to regions with lax oversight.
The development of a values-based governance framework for PGE requires policymakers to consider contextual socio-cultural and political factors, impacting said policies. Until now, however, somatic and germline gene editing (GE) policies have been developed using a technocratic approach, top-down governance, leaving the underlying socio-ethical and moral foundations vague. Collective deliberation on policies and their foundations has been a secondary goal, a limitation that requires critical solutions.
To evaluate how a values-based governance framework for PGE could be developed, we conducted a comparative policy study (soft and hard laws) in 40 jurisdictions to identify the rationale and values supporting the governance of PGE. Our analysis shows a dichotomy of ethical principles, with of autonomy, dignity and justice occupying a predominant role, though these notions are subject to different conceptualizations. In contrast, calls for assessing the socio-ethical implications of GE and for fostering different kinds of collective deliberation appear to be merely ancillary. We outline a values-based governance framework for PGE based on meaningful stakeholder inclusion and the incorporation of translational justice considerations. We further address potential transformative effects of PGE with respect to what it means to be human.
Learning Objectives:
After participating in this conference, attendees should be able to:
To learn about national and international policies relevant to somatic, germline and prenatal gene editing.
To analyze the socio-ethical principles and values underlying national and international policy approaches described in objective 1
Based on objectives 1 and 2, to outline a values-based governance framework for prenatal gene editing
Yvonne Bombard – Institute for Health Policy, Management and Evaluation, University of Toronto; Heidi Howard – Lund University; Kelly Ormond – (ETH Zurich, Health Ethics & Policy Lab, Department of Health Sciences and Technology); Roel Feys – 1 Dr. John T. Macdonald Foundation Department of Human Genetics, John P. Hussman Institute for Human Genomics, Miller School of Medicine, University of Miami,
