Associate Professor of Human Genetics University of Miami, United States
As the translation potential of prenatal human gene editing increases, so does the necessity for values-based governance. Reproductive technologies are one of the most inconsistently governed areas of biomedical research and medicine; reflecting the broader social, moral, and political society in which they are embedded. Policies regulating these areas often adopt a technocratic approach, focusing mainly on permissibility criteria or measures for suppression, leaving their underlying socio-ethical normative underpinnings vague. As such, calls for engaging in collective democratic deliberation in the assessment of critical societal implications appear as rhetorical pleas of secondary importance. Based on our comparative policy study covering ~40 jurisdictions, we identify the societal values, ethical principles and governance mechanisms supporting policy approaches to prenatal human gene editing . We analyze soft (e.g., professional guidelines) and hard laws (e.g., statutes), paying special attention to heterogeneous conceptualizations of justice and beneficence, which - after autonomy and dignity, are the most discernable principles underpinning policy frameworks. We further focus on emerging translational justice challenges and outline a framework for incorporating translational justice considerations within governance structures across the PGE clinical research continuum.
Authors: Rosario Isasi, Dpt. Human Genetics, John P. Hussman Institute for Human Genomics, University of MiamiUniversity of Miami; 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, John P. Hussman Institute for Human Genomics, University of Miami
