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. These two data populations configure differently the community of 'Danish patients' who might benefit from precision medicine, and thereby prescribe different moral continuities between person, state, and territory. We argue that the DNGC's patient genome population reinforces reciprocal relations of obligations and responsibility between the Danish welfare state and all individuals, while the proposed Danish reference genome population privileges the state's commitment to individuals with biographical-territorial belonging to the nation-state. Drawing on scholarship on social and health citizenship, as well as data solidarity in the Nordics, the discussion shows how population curation in national precision medicine initiatives might both construct and stratify political obligation. Whereas STS scholarship has previously deconstructed the concept of 'population', in the context of the troubling and violent effects of the management of human populations, we point to the importance of population curation as a vehicle for making the individual legible as part of a community to which the state is responsible and for which it is committed to care.

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') giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir's concept of moral ambiguity as a lens to frame the participants' experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir's concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine.

Clinical ethics committees.

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 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. Collaborations between professionals in the medical and health sciences and the social sciences and humanities often take an asymmetrical form, as when social scientists use ethnographic approaches to study the moral issues and practices of physicians. The ethics laboratory described in this article is a cross-sectoral and inter-disciplinary forum for collaborative investigation on important moral topics. It offers an experimental way of unpacking implied assumptions, underlying values, and comparable notions from different professional healthcare fields. The aim of this article is to present the ethics laboratory's methodology. The article offers a model and a hermeneutical framework that rests on a dialogical approach to ethical questions. The model and the framework derive from a Danish research project, Personalized Medicine in the Welfare State. This article uses personalized medicine as a point of reference, though it offers an argument for the applicability of the model more broadly.

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. We analyse how Marcel's understanding of hope is reflected in EOL studies, and how this perception can enrich the philosophy of PC and significantly deepen and broaden HCPs' understanding of hope. Our findings prove that despite terminological differences between Marcelian phenomenology and the concepts of hope in the 20 EOL studies, hope emerges as a resourceful movement towards being. Implementing Marcelian hope within communication in EOL care could help in HCPs' interpersonal approach to patients as his concept harbors a holistic perception of the existential situation of a person. Equally, introducing Marcel's phenomenology of hope into the clinical encounter could play a beneficial role in improving the ability of patients to adapt to the difficult conditions of their disease and PC treatment.

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. Having faced a life-threatening disease but no longer being in imminent danger of dying, survivors still considered death a defining yet dynamic component in their approach to life as a moving toward the end, sparking a sense of vitality in mortality. In order to unfold the interviewees' renewed existential understanding post cancer, this study employs Martin Heidegger's ontological analysis of death. In survivorship, my participants can thus be understood as being left with the perpetual choice between living in inauthenticity or in authenticity. The difference between the two modes of existence exhibits two diverging ways of relating to death, self, and being-in-the-world. At the same time, the role of death in long-term survivorship reflects back on the magnitude of the initial existential and moral upheaval triggered by the cancer diagnosis. Understanding the role of death in long-term survivorship can positively inform the field of cancer rehabilitation and long-term survivor care.

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. This article examines long-term cancer survivors' suffering from the vantage point of selfhood and provides a philosophical interpretation of the reintegration of the self by illuminating their stories of despair through the Danish philosopher Søren Kierkegaard's seminal work The Sickness Unto Death. The participating survivors described how the cancer experience had quaked old perceptions of self, instigating them to question the depth of their self-understanding before the cancer and who they really were. In relating to themselves, they realized the dynamic process of becoming who they are by continuing to balance opposing poles within the self. This act of relating to self revealed the limit of the autonomous self in the creation of selfhood. The article intends to illustrate how a philosophical reading of selfhood and suffering in survivorship can inform medicine and inspire models for follow-up cancer care for long-term survivors.

[The first Danish paediatric ethical committee]. / Landets første klinisk etisk komite for pædiatri

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. Within paediatrics a need for ethical reflection seems obvious.

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. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this article we show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer.