Patient-derived xenografts 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. 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. (shrink)

One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data (...) practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories. (shrink)

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. (shrink)

This article introduces _the Ethics Laboratory_ as an inter-sectorial and cross-disciplinary dialogical forum which can be viewed as an educational tool for moral learning. _The Ethics Laboratory_ represents a platform for the informal, collaborative investigation, in strict confidentiality, of ethical questions that have social consequences and/or legal concerns and bridges boundaries between research communities, institutions and patients. Its methodological structure proposes an experimental, open-ended way of unpacking implied assumptions, underlying values, comparable notions and observations from different professional fields. In connection (...) with a large social science project on precision medicine, we conducted four Ethics Laboratories followed by eight interviews with a selected number of participants. Through these interviews we learnt how this exploratory dialogical forum heighten moral awareness on issues that are shared among stakeholders who work to implement precision medicine in Denmark. Though the framework was developed specifically to foster ethical reflection within precision medicine, its dialogical structure lends itself to other professional areas and can easily be adopted and carried out. (shrink)

In 2004, prenatal risk assessment (PRA) was implemented as a routine offer in Denmark, in order to give all pregnant women an informed choice about whether to undergo prenatal testing. PRA is a non-invasive intervention performed in the first trimester of pregnancy and measures the risk of a fetus having Down's syndrome or other chromosomal disorders. The risk figure provides the basis for action, i.e. the decision about whether or not to undergo invasive fetal testing via the maternal route (amniocentesis (...) or chorionic villus sampling), which, however, involves the risk of inducing a miscarriage. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, this paper investigates how ideals such as autonomy and non-directiveness are practised in processes of decision-making. We view such ideals as forming social practice rather than neutral instruments to reach a certain goal. Focusing on one couple's trajectory through the clinical practices of PRA and the process through which a decision is reached, we call into question the assumption that more choice and more objective information is a source of empowerment and control. We make evident how decisions are made through a complicated process of meaning-making, which emerges through the relationship between professionals, the clinical setting and the social life of the couples. In the face of complex risk knowledge, PRA users are reluctant to make choices and seek to re-install authority in the health professionals. However, when assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the fetus. It is argued that PRA performs a form of government that works not through compulsion or persuasion but through choice. An ethic of a shared responsibility for PRA and its outcome between pregnant women and health professionals would be more in agreement with how decisions are actually made. (shrink)

In 2004, twelve capuchin monkeys were moved from the labs of the Danish psychiatric hospital of Sankt Hans to a small private-owned zoo in another part of Denmark in order to be rehabilitated. These monkeys were the last nonhuman primates to be used as research animals in Danish biomedical laboratories. The normal procedure would be to kill research animals after the termination of an experiment; in this case, however, a decision was reached to close down the lab. The moral landscape (...) had changed, and it was no longer considered acceptable to use nonhuman primates in Danish biomedicine. From being considered a biological resource serving as a model of man, the monkeys had become moral subjects with a claim to a life suiting their natural needs. Simultaneously, the monkeys became instrumental in creating moral legitimacy for the actors involved in their rescue. What we see is an instance of pathfinding in a changing moral landscape where actors negotiate nonhuman primate nature as they create new moral positions for themselves. (shrink)

Remote monitoring of implantable cardioverter defibrillator (ICD) patients links patients wirelessly to the clinic via a box in their bedroom. The box transmits data from the ICD to a remote database accessible to clinicians without patient involvement. Data travel across time and space; clinicians can monitor patients from a distance and instantly know about cardiac events. Based on ethnographic fieldwork in two Danish hospitals, this article explores the configuration of the wireless ICD patient by following a number of patients through (...) hospitalisation, implantation, in-clinic follow-up, and remote monitoring. Wireless therapy, we argue, scripts the patient as data. In high-tech clinical encounters, data are enacted as extensions and copies of the patient, and even proxies that, in patients’ experiences, may turn into identity thieves. In illuminating the multiple positions that data take in such clinical encounters and in patients’ experiences we discuss the ambiguities that arise when patients go wireless. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of empowerment (...) and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups. 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. (shrink)

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. (shrink)

Proponents of precision medicine envision that digital phenotyping can enable more individualized strategies to manage current and future health conditions. We problematize the interpretation of digital phenotypes as straightforward representations of individuals through examples of what we call data inheritance. Rather than being a digital copy of a presumed original, digital phenotypes are shaped by larger data collectives that precede and continuously change how the individual is represented. We contend that looking beyond the individual is crucial for understanding the factors (...) that can ‘bend’ digital mirrors in specific directions. Since algorithms used for digital profiling are based on historical data, their predictions often inherit and increase the values and perspectives of past data practices. Moreover, the data legacies we leave behind today may return as so-called ‘data phantoms’ that conflict with the interests of the individual and contest who and what the ‘original’ is. (shrink)