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.

Domesticating data: Traveling and value-making in the data economy.

Data are versatile objects that can travel across contexts. While data's travels have been widely discussed, little attention has been paid to the sites from where and to which data flow. Drawing upon ethnographic fieldwork in two connected data-intensive laboratories and the concept of domestication, we explore what it takes to bring data 'home' into the laboratory. As data come and dwell in the home, they are made to follow rituals, and as a result, data are reshaped and form ties with the laboratory and its practitioners. We identify four main ways of domesticating data. First, through storytelling about the data's origins, data practitioners draw the boundaries of their laboratory. Second, through standardization, staff transform samples into digital data that can travel well while ruling what data can be let into the home. Third, through formatting, data practitioners become familiar with their data and at the same time imprint the data, thus making them belong to their home. Finally, through cultivation, staff turn data into a resource for knowledge production. Through the lens of domestication, we see the data economy as a collection of homes connected by flows, and it is because data are tamed and attached to homes that they become valuable knowledge tools. Such domestication practices also have broad implications for staff, who in the process of 'homing' data, come to belong to the laboratory. To conclude, we reflect on what these domestication processes-which silence unusual behaviours in the data-mean for the knowledge produced in data-intensive research.

Slowing down decay: biological clocks in personalized medicine.

This article discusses so-called biological clocks. These technologies, based on aging biomarkers, trace and measure molecular changes in order to monitor individuals' "true" biological age against their chronological age. Drawing on the concept of decay, and building on ethnographic fieldwork in an academic laboratory and a commercial firm, we analyze the implications of the development and commercialization of biological clocks that can identify when decay is "out of tempo." We show how the building of biological clocks rests on particular forms of knowing decay: In the academic laboratory, researchers focus on endo-processes of decay that are internal to the person, but when the technology moves to the market, the focus shifts as staff bracket decay as exo-processes, which are seen as resulting from a person's lifestyle. As the technology of biological clocks travels from the laboratory to the market of online testing of the consumer's biological age, we observe shifting visions of aging: from an inevitable trajectory of decline to a malleable and plastic one. While decay is an inevitable trajectory starting at birth and ending with death, the commercialization of biological clocks points to ways of stretching time between birth and death as individuals "optimize" their biological age through lifestyle changes. Regardless of admitted uncertainties about what is measured and the connection between maintenance and future health outcomes, the aging person is made responsible for their decaying body and for enacting maintenance to slow down decay. We show how the biological clock's way of "knowing" decay turns aging and its maintenance into a life-long concern and highlight the normative implications of framing decay as malleable and in need of intervention.

Precision patients: Selection practices and moral pathfinding in experimental oncology.

This paper addresses selection practices in a Danish phase 1 unit specialised in precision medicine in the field of oncology. Where precision medicine holds the ambition of selecting genetically fit medicine for the patient, we find that precision medicine in the early trial setting is oriented towards selecting clinically and genetically fit patients for available treatment protocols. Investigating how phase 1 oncologists experience and respond to the moral challenges of selecting patients for early clinical trials, we show that inclusion criteria and patient categories are not always transparent to patients. Lack of transparency about inclusion criteria has been interpreted as morally problematic. Yet drawing on social science studies of 'unknowing', we argue that silence and non-transparency in interactions between oncologists and patients are crucial to respect the moral agency of patients at the edge of life and recognise them as belonging to the public of Danish health care. In the discussion, we consider the practice of placing 'unfit' patients on a waiting list for trial participation. Rather than representing an ethical and political problem, we argue, the waiting list can act as a valve enabling oncologists to navigate the scientific and as well as the moral uncertainties in phase 1 oncology.

Taming Time: Configuring Cancer Patients as Research Subjects.

This article explores how incurable cancer patients in the affluent Danish welfare state are recruited to clinical trials. We show that patients' impending death constitutes their potential for being configured as research subjects. To produce valuable data, patients who enroll in trials and health care professionals must engage in daily "time practices" that prolong the threshold between life and death. When death becomes inevitable, the limit of configuring dying cancer patients as research subjects is reached. Navigating this temporal logic, health care professionals balance the boundary between patients' instrumental worth as research subjects and their intrinsic worth as dying cancer patients. Whereas previous studies have critically uncovered how clinical trials operate at socioeconomic margins, we point to the ways in which clinical trials operate through temporal margins. We argue that clinical trials are dependent on configuring marginal societal spaces and marginal bodies from which to produce knowledge.

Mouse avatars of human cancers: the temporality of translation in precision oncology.

Patient-derived xenografts (PDXs) are currently promoted as new translational models in precision oncology. PDXs are immunodeficient mice with human tumors that are used as surrogate models to represent specific types of cancer. By accounting for the genetic heterogeneity of cancer tumors, PDXs are hoped to provide more clinically relevant results in preclinical research. Further, in the function of so-called "mouse avatars", PDXs are hoped to allow for patient-specific drug testing in real-time (in parallel to treatment of the corresponding cancer patient). This paper examines the circulation of knowledge and bodily material across the species boundary of human and personalized mouse model, historically as well as in contemporary practices. PDXs raise interesting questions about the relation between animal model and human patient, and about the capacity of hybrid or interspecies models to close existing translational gaps. We highlight that the translational potential of PDXs not only depends on representational matching of model and target, but also on temporal alignment between model development and practical uses. Aside from the importance of ensuring temporal stability of human tumors in a murine body, the mouse avatar concept rests on the possibility of aligning the temporal horizons of the clinic and the lab. We examine strategies to address temporal challenges, including cryopreservation and biobanking, as well as attempts to speed up translation through modification and use of faster developing organisms. We discuss how featured model virtues change with precision oncology, and contend that temporality is a model feature that deserves more philosophical attention.

Time and Personhood across Early and Late-Stage Dementia.

How do time and personhood become related when dementia sets in? This article brings together ethnographies from a memory clinic and a dementia nursing home in Copenhagen, Denmark, pursuing how personhood and time become intertwined across early and late-stage dementia. In the memory clinic, the dementia diagnosis is enacted and experienced simultaneously as an indispensable prophecy of discontinuity of personhood and life for the patients, and as a prognosis that renders the future indeterminate and open to intervention. In the nursing home, institutionalized care marks the fulfillment of the prophecy of decline, yet nursing home staff insist on practicing prognoses for the residents. Across our empirical sites, we enquire what the tension between prophecy and prognosis mean for personhood and the possibilities of the present, arguing that people with dementia are made and unmade through different understandings and enactments of future-oriented temporalities.

A Clinical Careography: Steering Life-and-death Decisions Through Care.

OBJECTIVES: In many Euro-American societies, the ideal of patient and family involvement in clinical decision-making prevails. This ideal exists alongside the doctor's obligation and responsibility to make decisions and to be accountable for them. In this article, we explore how medical staff navigate the tension between autonomy and authority when engaging life-and-death decision-making in a Danish NICU. METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists. RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants. CONCLUSIONS: We conceptualize decisions as an art of "careography." Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.

Translational neonatology research: transformative encounters across species and disciplines.

This paper explores the laborious and intimate work of turning bodies of research animals into models of human patients. Based on ethnographic research in the interdisciplinary Danish research centre NEOMUNE, we investigate collaboration across species and disciplines, in research aiming at improving survival for preterm infants. NEOMUNE experimental studies on piglets evolved as a platform on which both basic and clinical scientists exercised professional authority. Guided by the field of multi-species research, we explore the social and material agency of research animals in the production of human health. Drawing on Anna Tsing's concept of "collaborative survival", we show that sharing the responsibility of the life and death of up to twenty-five preterm piglets fostered not only a collegial solidarity between basic and clinical scientists, but also a transformative cross-fertilization across species and disciplines-a productive "contamination"-facilitating the day-to-day survival of piglets, the academic survival of scientists and the promise of survival of preterm infants. Contamination spurred intertwined identity shifts that increased the porosity between the pig laboratory and the neonatal intensive care unit. Of particular significance was the ability of the research piglets to flexibly become animal-infant-patient hybrids in need of a united effort from basic and clinical researchers. However, 'hybrid pigs' also entailed a threat to the demarcation between humans and animals that consolidates the use of animals in biomedical research, and efforts were continuously done to keep contamination within spatial limits. We conclude that contamination facilitates transformative encounters, yet needs spatial containment to materialize bench-to-bedside translation.

Careography: Staff Experiences of Navigating Decisions in Neonatology in Denmark.

In this article, we explore medical doctors' moral experiences of being responsible for decisions on the lives and sometimes deaths of infants in a Danish Neonatal Intensive Care Unit (NICU). Drawing on fieldwork, we investigate how clinicians navigate the tension between exercising medical authority and enabling parental involvement in decisions. Introducing the term "careography", we call attention to how the doctors steer this tension through care for the infant, parents, colleagues, and society in ways that help them overcome moral ambivalences. We suggest that "careography" holds analytical potential to bridge anthropological theories of power, experience, and care.

The Attachment Imperative: Parental Experiences of Relation-making in a Danish Neonatal Intensive Care Unit.

In this article, we explore how parents establish relations with extremely premature infants whose lives and futures are uncertain. Drawing on ethnographic fieldwork in a Danish Neonatal Intensive Care Unit (NICU), we engage recent discussions of the limits of conventional anthropological thinking on social relations and point to the productive aspects of practices of distance and detachment. We show that while the NICU upholds an imperative of attachment independently of the infant's chances of survival, for parents, attachment is contingent on certain hesitations in relation to their infant. We argue that there are nuances in practices of relationmaking in need of more attention (i.e., the nexus of attachment and detachment). Refraining from touching, holding, and feeding their infants during critical periods, the parents enact detachment as integral to their practices of attachment. Such "cuts" in parent-infant relations become steps on the way to securing the infant's survival and making kin(ship). We conclude that although infants may be articulated as "maybe-lives" by staff, in the NICU as well as in Danish society, the ideal of attachment appears to leave little room for "maybe-parents."

Resisting decay: On disposal, valuation, and care in a dementia nursing home in Denmark.

This paper approaches institutionalized dementia care as a site of societal disposal, valuation, and care for human life. Drawing upon six weeks of ethnographic fieldwork and ten qualitative interviews carried out in a Danish dementia nursing home in 2014, we analyze how nursing home staff, through everyday care, uphold the value of life for residents in severe mental and physical decline. We argue that life's worth is established when residents gain qualities of personhood and agency through substitution processes carried out by staff. Yet the persistent absence of conventional personhood and autonomous agency in residents (i.e. capacities for memory, consciousness, language, and mobility) evokes experiences of ambiguity in staff and relatives of residents. We close the article with a discussion of this ambiguity and the significance of the nursing home as care institution in the welfare state. Dementia care, we propose, is not only about preserving the lives of people with dementia. At stake in the daily care practices around severely disabled residents in the nursing home is the very continuance of the main principles of the welfare society.

Feeding premature neonates: Kinship and species in translational neonatology.

Kinship, understood as biogenetic proximity, between a chosen animal model and a human patient counterpart, is considered essential to the process of 'translating' research from the experimental animal laboratory to the human clinic. In the Danish research centre, NEOMUNE, premature piglets are fed a novel milk diet (bovine colostrum) to model the effects of this new diet in premature infants. Our ethnographic fieldwork in an experimental pig laboratory and a neonatal intensive care unit (NICU) in 2013-2014 shows that regardless of biogenetics, daily practices of feeding, housing, and clinical care hold the potential for stimulating and eroding kinship relations between human and nonhuman actors. In the laboratory, piglets and researchers form 'interspecies-milk-kinships' that entail the intimate care crucial to keeping the compromised piglets alive during the experiments, thereby enhancing what the researchers refer to as the 'translatability' of the results. In the NICU, parents of premature infants likewise imagine a kind of interspecies kinship when presented with the option to supplement mother's own milk with bovine colostrum for the first weeks after birth. However, in this setting the NICU parents may perceive the animality of bovine colostrum, and the background information obtained in piglets, as a threat to the infants' connection to their biological parents as well as the larger human collective. Our study argues that the 'species flexibility' of premature beings profoundly shapes the translational processes in the field of neonatology research.

Recognizing Dementia: Constructing Deconstruction in a Danish Memory Clinic.

This article investigates how a person with dementia is made up through intersubjective acts of recognition. Based on ethnographic fieldwork in a Danish memory clinic, we show that identification of disease requires patients to be substituted by their relatives in constructing believable medical narratives; yet during memory testing, patients are not allowed any substitution to clearly expose cognitive shortcomings. In combining works of theorists Ian Hacking and Paul Ricoeur, we argue that the clinical identification of dementia unmakes the knowing subject, a deconstruction that threatens to misrecognize and humiliate the person under examination. The article ends by proposing that dementia be the condition that forces us to rethink our ways of recognizing persons more generally. Thus, dementia diagnostics provide insights into different enactments of the person that invite us to explore practices of substitution and modes of interaction emerging when our fundamental dependency becomes unquestionable.

Humanity at the Edge: The Moral Laboratory of Feeding Precarious Lives.

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of 'the human' that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that 'the human' at stake in the moral laboratory of feeding precarious lives puts 'the human' in anthropology at disposal for moral experimentation.

Selective Reproduction: Social and Temporal Imaginaries for Negotiating the Value of Life in Human and Animal Neonates.

This article employs a multi-species perspective in investigating how life's worth is negotiated in the field of neonatology in Denmark. It does so by comparing decision-making processes about human infants in the Danish neonatal intensive care unit with those associated with piglets who serve as models for the premature infants in research experiments within neonatology. While the comparison is unusual, the article argues that there are parallels across the decision-making processes that shape the lives and deaths of infants and pigs alike. Collectivities or the lack thereof as well as expectations within linear or predictive time frames are key markers in both sites. Exploring selective reproductive processes across human infants and research piglets can help us uncover aspects of the cultural production of viability that we would not otherwise see or acknowledge.

In the mood for science: a discussion of emotion management in a pharmacogenomics research encounter in Denmark.

We investigated the practices through which patients in treatment for depression become research subjects in pharmacogenomics research in Denmark. On the basis of an ethnographic study of research subject participation taking place between May 2006 and August 2007, we conceptualized the efforts made by both researchers and research subjects at the research encounter as emotion management, through which the raw material of pharmacogenomics research is created. The study demonstrates that management of emotions in the research encounter is necessary to secure high quality data and simultaneously produces new relations of exchange - exchanges we view as important fuel in the generation of biovalue. In bringing this analysis into dialogue with the bioethical emphasis on altruism, we challenge the assumption that research participation comes about by linking already available, that is, 'altruistic', individuals to research institutions. We suggest that the emotion management taking place in the research encounter and the relations of exchange established through it actualize behavior we recognize as 'altruistic'. We conclude that there is no morally relevant conflict between 'altruistic behaviour' and the production of exchange relations.

OECD guidelines on open access: commercialization in disguise?

The Organisation for Economic Co-operation and Development (OECD) has published a new set of principles and guidelines to promote open access to datasets and results from publicly funded research. However, there is reason to think twice about the implications of making demands for transparency and open access for publicly funded research only. How will such demands affect incentives and research agendas? Might this new regulation of publicly funded research have undesirable effects on the quality and value of research? Placing the OECD guidelines in a broader context of research regulation, we argue that they might provide a further push toward collaboration with commercially sponsored research and reinforce incentive structures that favour the creation of commercial value.