Population curation: The construction of mutual obligation between individual and state in Danish precision medicine.

How do precision medicine initiatives (re)organize relations between individuals and populations? In this article, we investigate how the curation of national genomic populations enacts communities and, in so doing, constructs mutual obligation between individuals and the state. Drawing on ethnographic fieldwork in the Danish National Genome Center (DNGC), we show how members of advisory bodies negotiated the inclusion criteria for two different genomic populations: a patient genome population and an envisioned 'Danish' reference genome population. The patient genome population was curated through a politics of inclusion, of as many genomes as possible, whereas the reference genome was to be curated through a politics of exclusion, to include only the genomes of 'ethnic' Danes.

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This review describes the clinical ethics committees in Denmark. The clinical ethics committee is an interdisciplinary committee at a hospital intended to analyse ethically challenging situations and burdensome choices in patient care. The work in Danish KEKs takes place without formal organisation, in contrast to several other countries, where clinical ethics is regulated by law as research ethics is in Denmark.

The fertility of moral ambiguity in precision medicine.

Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e.

The Ethics Laboratory: A Dialogical Practice for Interdisciplinary Moral Deliberation.

Recent advancements in therapeutic and diagnostic medicine, along with the creation of large biobanks and methods for monitoring health technologies, have improved the prospects for preventing, treating, and curing illness. These same advancements, however, give rise to a plethora of ethical questions concerning good decision-making and best action. These ethical questions engage policymakers, practitioners, scientists, and researchers from a variety of fields in different ways.

Shades of hope: Marcel's notion of hope in end-of-life care.

This article examines the compatibility and relevance of Gabriel Marcel's phenomenology of hope in interdisciplinary research on the role of hope in end-of-life (EOL) care. Our analysis is divided into three thematic topics which examine the various shades of hope observed in Marcel's phenomenology of hope and in the collection of 20 EOL studies on hope as experienced by adult palliative care (PC) patients, health care professionals (HCP) and parents of terminally ill children. The three topics defining the shades of hope are: the meaning of hope in its dynamic aspects, the dialectics of hope and despair, and the transcendent facets of hope.

The Vitality of Mortality: Being-Toward-Death and Long-Term Cancer Survivorship.

Long-term cancer survivorship is an emerging field that focuses on physical late-effects and psychosocial implications for the inflicted. This study wishes to cast light on the underlying ontological aspect of long-term survivorship by philosophically exploring how being in life post cancer is perceived by survivors. Sixteen in-depth interviews with 14 Danish cancer survivors were conducted by the author.

Stories of despair: a Kierkegaardian read of suffering and selfhood in survivorship.

A life-threatening illness such as cancer can bring about much existential suffering and a disconnect to self in spite of surviving cancer. In my recent research project, I interviewed 14 long-term cancer survivors on being post cancer. Contrary to common assumptions about long-term survivorship, my interviewees reported grave existential difficulties in finding a firm footing in their sense of self, fostering a variety of stories of despair.

[The first Danish paediatric ethical committee].

We report the experiences from the first two years of a paediatric ethical committee at Rigshospitalet. The committee consists of five clinicians (nurses and doctors) and five non-clinicians. Themes of the sixteen reported case were: genetic testing, life-sustaining treatment ("when is enough enough?"), non-consensus between the parents and health personal and between different health personal, controversies to different religious wishes and to optimizing resources of the department versus individual care of a critically ill child.

Authoring experience: the significance and performance of storytelling in Socratic dialogue with rehabilitating cancer patients.

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups (SDG). Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given.