Bizarre Bioethics：Ghosts, Monsters, and Pilgrims

The focus of bioethical debates on exceptional cases neglects the underlying values—like justice and community—that would lend to a broader, more well-rounded understanding of today's world. Discussions of ethical problems in health care too often concentrate on exceptional cases. Bioethical controversies triggered by experimental drugs, gene-edited babies, or life extension are understandably fascinating: they showcase the power of medical science and technology while addressing anxieties concerning health, disease, suffering, and death. However, the focus on rare individual cases in the media spotlight turns attention away from more pressing ethical issues that impact global populations, such as access to health care, safe food and water, and the prevention of emerging infectious diseases. In Bizarre Bioethics, Henk A.M.J. ten Have argues that this focus on bizarre cases leads to bizarre bioethics with a narrow agenda for ethical debate. In other words, although these extreme cases are undeniably real, they present a limited and skewed view of everyday moral reality. This focus also assumes that individuals are rational decision-makers, so that the role of feelings and emotions can be downgraded. Larger questions related to justice, solidarity, community, meaning, and ambiguity are not appreciated. Such questions used to be posed by philosophical and theological traditions, but they have been exorcised and marginalized in the development of bioethics. Science, ten Have writes, is not a value-free endeavor that provides facts and evidence: it is driven by underlying value perspectives that are often based on metaphors and world views from philosophical and theological traditions. Drawing on a rich analysis of the literature, ten Have explains how bioethical discussion can be enriched by these metaphors and develops a broader approach that critically delves into the imaginative world views that determine understanding of the world and human existence. Examining the roles of the metaphors of ghosts, monsters, pilgrims, prophets, and relics, ten Have illustrates how science and medicine are animated by imaginations that fuel the search for hope, salvation, healing, and a predictable future. Bizarre Bioethics invites students, researchers, policymakers and teachers interested in ethics and health care to think about the value perspectives on health and disease today.