ABSTRACT
As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.
Subject(s)
Gene Editing/ethics , Genome, Human/genetics , Bioethical Issues , Embryo, Mammalian , Germ Cells , HumansABSTRACT
This essay explores the two main objectives of Bishop's book, which he analyzes in the context of the care for the dying: (1) the medical metaphysics underlying medical science and (2) biopolitics as governance of the human body. This essay discusses Bishop's claims in view of newer developments in medicine, especially the turn to the construction of life, and confronts the concept of the patient's sovereignty with an alternative model of vulnerable agency. In order to overcome the impasses of contemporary bioethics, the essay argues that practical reason requires a two-fold ethics: first, it must develop a new hermeneutics of illness and disease, and second, in order to protect the individuals in the process of dying, moral claims concerning death must be based on the concept of human rights.
Subject(s)
Bioethical Issues , Death , Philosophy, Medical , Terminal Care/ethics , Cadaver , Genetic Engineering/ethics , Human Rights , Humans , Personal Autonomy , Politics , Social ResponsibilityABSTRACT
Reproductive autonomy is often used as an argument to offer assisted reproduction services to women and to continue research into improving this service. What is often overlooked, however, is the gendered and normative background of parenthood, especially of motherhood. In this paper, I attempt to make women visible and to listen to their voices. Turning to the women's stories, the ethical perspective might be reversed: the so-called 'side-effects' of the overall successful assisted reproduction with or without genetic diagnosis, are to be considered the 'main effects' of assisted reproduction--true for the majority of couples and women. Autonomy, then, must be reformulated as concept of moral agency in the context of divergent social contexts and cultures of parenthood, of socially shaped images of disability, and in the context of scientific visions of technology which do not necessarily match with the medical practice.
