INV13
The ethics of human genome editing
K Alex(1,2)
1:AG Winkler, Section Translational Medical Ethics, Department of Medical Oncology, National Center for Tumor Diseases (NCT), NCT Heidelberg, a partnership between DKFZ and Heidelberg University Hospital, Heidelberg University, Medical Faculty Heidelberg, Heidelberg, 69120, Germany; 2:Philosophy Seminar, Heidelberg University, Heidelberg, 69120, Germany
A central issue in recent debates about genome editing (GE) is the question whether germline GE (GGE) should be translated from lab to life, too (cf. position papers by the US’ & UK’s International Commission on the Clinical Use of Human GGE, and by the German Ethics Council). The ethics of human GE are primarily concerned with this question and have been since before the advent of CRISPR/Cas. In this talk, selected aspects of the more recent debate are presented. First, the numerous ethical flaws of the “He Jiankui Affair” (as Henry Greely calls it), which can be taken as reasons against proceeding from lab to life with GGE, are summarized. Second, insights into current ethical debates are offered by outlining an argument for the position that GGE is very unlikely to affect the edited embryo (or the person it becomes) in either a beneficial or harmful manner since it is quite probable that this person never came into existence without GGE. This argument has been independently formulated by several bioethicists (e.g., Robert Sparrow, Thomas Douglas, Christoph Rehmann-Sutter and me). Third, implications of this finding for determining whether we should proceed from lab to life with GGE are discussed. Since the ethical debate has been primarily concerned with interventions at the germline level ever since its inception, the focus of the presentation is chosen accordingly, but ethical challenges relating both to somatic and germline interventions (e.g., risks, equity of access, and cost coverage) will be considered in a final outlook.