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Both inside and outside the health services, patients and healthy citizens give rise to increasing amounts of health data. They are created, collected, curated, stored and used for multiple purposes in a process I characterise as intensified data sourcing. This data intensification changes how we deal with health issues. In this chapter I reflect on similarities and differences between data flows mediated by public and private institutions, using Denmark as my primary example. Denmark in interesting ways prescribes a form of solidarity that might be associated with We Medicine: people deliver data in the process of receiving, or in exchange for, publicly financed healthcare; and the data can be used for research for the common good. The solidarity of the model is currently being challenged in various ways, however, as authorities circumvent the voluntariness of participation and begin seeing health data as business opportunities. Simultaneously, a private market in health data is emerging mediated by privately owned platforms. The chapter compares the public and commercial forms of data sourcing to explore what is at stake for individuals and society in those processes.

This book addresses the debate usually tagged as being about 'markets in human body parts' which is antagonistically divided into pro-market and anti-market positions. The author provides a set of propositions about how to approach this and shows a way out of the concrete impasse of it.Assumptions about markets and bodies that characterize this debate are analyzed and described while the author argues that these assumptions are in fact constitutive for exchanges of human bodily material - but in unacknowledged ways. It is concluded that what we need is a different analytical approach to better understand the mechanisms at play when organizations exchange organs, tissues and cells for use in transplantation and fertility medicine. Assumptions about markets and bodies that characterize this debate are analyzed and described while the author argues that these assumptions are in fact constitutive for exchanges of human bodily material - but in unacknowledged ways. It is concluded that what we need is a different analytical approach to better understand the mechanisms at play when organizations exchange organs, tissues and cells for use in transplantation and fertility medicine

This article proposes the term "safety logics" to understand attempts within the European Union (EU) to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to explore the types of "safety" produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practitioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape.

This article proposes the term ''safety logics'' to understand attempts within the European Union (EU) to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to explore the types of ''safety'' produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practi- tioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape. ; This article proposes the term "safety logics" to understand attempts within the European Union (EU) to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to explore the types of "safety" produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practitioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape.

This article proposes the term "safety logics" to understand attempts within the European Union (EU) to harmonize member state legislation to ensure a safe and stable supply of human biological material for transplants and transfusions. With safety logics, I refer to assemblages of discourses, legal documents, technological devices, organizational structures, and work practices aimed at minimizing risk. I use this term to reorient the analytical attention with respect to safety regulation. Instead of evaluating whether safety is achieved, the point is to explore the types of "safety" produced through these logics as well as to consider the sometimes unintended consequences of such safety work. In fact, the EU rules have been giving rise to complaints from practitioners finding the directives problematic and inadequate. In this article, I explore the problems practitioners face and why they arise. In short, I expose the regulatory anatomy of the policy landscape.

L'anthropologie est définie comme l'étude de l'être humain (anthrôpos) ; mais où peut-on localiser le sujet de cette discipline ? Dans cet article, je propose d'explorer un type particulier d'entités que j'appelle les objets-frontières humains. Ces entités peuvent simultanément appartenir ou non au corps humain, relever de la personne et de la chose, du soi et du non-soi. La biomédecine actuelle repose en grande partie sur l'utilisation de tels objets, tant pour la recherche que pour le traitement. Cet article vise à montrer qu'ils constituent de nouveaux sites productifs pour l'analyse de thèmes classiques comme l'identité, la catégorisation et la liminalité. À partir d'exemples concrets, il s'agit de comprendre comment de tels espaces facilitent l'étude des négociations actuelles de l'identité dans la fabrique d'une nouvelle vie (traitement contre l'infertilité), la reconstruction du corps (technologie liée à la transplantation) et même la mort (incinération).

During the past few decades the rule of informed consent has thoroughly changed everyday decision-making in the healthcare sector. This paper explores the dissemination of informed consent from the perspective of organizational fashion studies. It is argued that this approach can be employed to stimulate renewed reflections on what informed consent procedures do as well as when and how such procedures become endorsed by various organizational actors. A history of the agencies involved in formulating the consent requirement is presented and related to the implications of this new emphasis on the autonomous choice of patients and research participants.

Background: 1985 saw the beginnings of a population-based biobank in Västerbotten County, Sweden. In 1999, a start-up genomics company, UmanGenomics, obtained 'all commercial rights' to the biobank. The company introduced an ethics policy, which was well received in prestigious journals, focusing on public oversight and informed consent. Aims: To explore how social anthropology can aid understanding of the challenges posed by the new role of the biobank in Västerbotten, and thus complement more established traditions in the field of medical ethics. An anthropological study of the ethics policy was executed. Theoretical perspective: Inspired by the anthropology of policy and social science perspectives on ethics and morality, the policy was studied at three analytical levels: policymakers (who formulate the policy), policy workers (who implement the policy, primarily nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the potential donors to the biobank). Methods: Policymakers, nurses, and potential donors were interviewed, donations observed, and official documents analysed to mirror the moral problematizations made at the three levels in each other and to study the practical implications of the policy. To extend the reliability of the findings two surveys were executed: one among the general population, one among donors. Results: The qualitative studies show that policymakers distinguish between blood and data differently to potential donors. Informed consent seems more important to policymakers than potential donors, who are more concerned about political implications at a societal level. Among the respondents from the survey in the general public, a majority (66.8%) accepted surrogate decisions by Research Ethics Committees; a minority (4 %) stated informed consent as a principal concern; and genetic research based on biobank material was generally accepted (71%). Among the respondents to the survey in donors, 65% knew they had consented to donate a blood sample, and 32% knew they could withdraw their consent; 6% were dissatisfied with the information they had received; and 85% accepted surrogate decisions by Research Ethics Committees. Discussion: The ethics policy constitutes a particular naming and framing of moral problems in biobank-based research which overemphasises the need for informed consent, and underemphasises other concerns of potential donors. This embodies a political transformation where access to stored blood and medical information is negotiated in ethical terms, while it also has unacknowledged political implications. In particular, the relations between authorities and citizens in the Swedish welfare state are apparently transforming: from mutual obligation to individual contracts. Conclusion: Anthropology contributes to medical ethics with increased awareness of the practical implications of particular research ethical initiatives. This awareness promotes appreciation of the political implications of ethics policies and raises new issues for further consideration.

During the past ten years the complex ethical, legal and social issues (ELSI) typically surrounding large-scale genetic biobank research initiatives have been intensely debated in academic circles. In many ways genetic epidemiology has undergone a set of changes resembling what in physics has been called a transition into Big Science. This article outlines consequences of this transition and suggests that the change in scale implies challenges to the roles of scientists and public alike. An overview of key issues is presented, and it is argued that biobanks represent not just scientific endeavors with purely epistemic objectives, but also political projects with social implications. As such, they demand clever maneuvering among social interests to succeed.

For years, attempts at ensuring the social sustainability of digital solutions have focused on ensuring that they are perceived as helpful and easy to use. A smooth and seamless work experience has been the goal to strive for. Based on document analysis and interviews with 15 stakeholders, we trace the setting up of a data infrastructure in Danish General Practice that had achieved just this goal – only to end in a scandal and subsequent loss of public support. The ease of data access made it possible for data to be extracted, exchanged and used by new actors and for new purposes – without those producing the data fully realizing the expansion of the infrastructure. We suggest that the case has wider relevance for a still more data-intensive healthcare sector and a growing data economy: when those who produce the data are not made aware of new uses of data, it makes it more difficult to resolve potential conflicts along the way. In the Danish case, conflicting views on legitimate data use led to the collapse of the infrastructure. Therefore, while seamlessness may be a solution to the old problem of a poor fit between user and technology, this celebrated virtue may also involve new problems relating to social instability. As digital solutions tend to be integrated still more seamlessly in still more of our activities, we need to develop political mechanisms to define and protect the rights and obligations of both data suppliers and users in order to ensure the long-term sustainability of digital infrastructures.