Mapping Genetic Frontiers: Seeking Translational Justice in Prenatal Gene Editing

Abstract: Methods for genetic editing in humans show promise for addressing previously intractable genetic conditions, but considerable gaps remain in governance structures for human gene editing and its translation to clinical practice. Calls for novel governance structures for prenatal human gene editing have pushed towards values-based approaches, moving beyond traditional technocratic considerations of safety and efficacy to take into account collective normative deliberation about the ethics of prenatal intervention. This panel will discuss the concept of “translational justice” and its application to prenatal gene editing, with particular attention to two important voices historically sidelined in conversations around the future of gene editing: patients and families that might be benefited or harmed by the translation of prenatal gene editing and the scientists and clinicians who would be on the front lines of its potential clinical translation. First, a political sociologist will describe the concept of translational justice, offering a framework for empirical groundwork to guide technologies towards more equitable use in healthcare. Second, a legal/policy expert will discuss regulatory and policy frameworks relevant to the potential clinical use of prenatal gene editing and preliminary data on how scientists and clinicians conceptualize their role in this process. Third, a medical anthropologist will share data from individuals impacted by genetic conditions on their views of gene editing generally and for specific conditions. Fourth, a philosopher will moderate the panel, engaging presenters and attendees around deliberative democracy and other approaches that bioethicists can employ to integrate scientific, policy, and stakeholder perspectives into a normative framework.