The collection and circulation of data is now a central element of increasingly more sectors of contemporary capitalism. This article analyses data as a form of capital that is distinct from, but has its roots in, economic capital. Data collection is driven by the perpetual cycle of capital accumulation, which in turn drives capital to construct and rely upon a universe in which everything is made of data. The imperative to capture all data, from all sources, by any means possible (...) influences many key decisions about business models, political governance, and technological development. This article argues that many common practices of data accumulation should actually be understood in terms of data extraction, wherein data is taken with little regard for consent and compensation. By understanding data as a form capital, we can better analyse the meaning, practices, and implications of datafication as a political economic regime. (shrink)

Precision Medicine has become a common label for data-intensive and patient-driven biomedical research. Its intended future is reflected in endeavours such as the Precision Medicine Initiative in the USA. This article addresses the question whether it is possible to discern a new ‘medical cosmology’ in Precision Medicine, a concept that was developed by Nicholas Jewson to describe comprehensive transformations involving various dimensions of biomedical knowledge and practice, such as vocabularies, the roles of patients and physicians and the conceptualisation of disease. (...) Subsequently, I will elaborate my assessment of the features of Precision Medicine with the help of Michel Foucault, by exploring how precision medicine involves a transformation along three axes: the axis of biomedical knowledge, of biomedical power and of the patient as a self. Patients are encouraged to become the managers of their own health status, while the medical domain is reframed as a data-sharing community, characterised by changing power relationships between providers and patients, producers and consumers. While the emerging Precision Medicine cosmology may surpass existing knowledge frameworks; it obscures previous traditions and reduces research-subjects to mere data. This in turn, means that the individual is both subjected to the neoliberal demand to share personal information, and at the same time has acquired the positive ‘right’ to become a member of the data-sharing community. The subject has to constantly negotiate the meaning of his or her data, which can either enable self-expression, or function as a commanding Superego. (shrink)

It is widely agreed that medical researchers who conduct studies in low- and middle-income countries (LMICs) are morally required to ensure that their research benefits the broader host community, not only the subjects. The justification for this moral requirement has not been adequately examined. Most attempts to justify this requirement focus on researchers' interaction with the community as a whole, not on their relationship with their subjects. This paper argues that in some cases, research must benefit the broader host community (...) for researchers to treat subjects and prospective subjects ethically. If research presents substantial net risks to subjects, researchers can ethically ask LMIC citizens to participate only if people in LMICs, normally including people in the host community, stand to benefit. (shrink)

New biotechnologies have propelled the question of what it means to be human - or posthuman - to the forefront of societal and scientific consideration. This volume provides an accessible, critical overview of the main approaches in the debate on posthumanism, and argues that they do not adequately address the question of what it means to be human in an age of biotechnology. Not because they belong to rival political camps, but because they are grounded in a humanist ontology that (...) presupposes a radical separation between human subjects and technological objects. The volume offers a comprehensive mapping of posthumanist discourse divided into four broad approaches-two humanist-based approaches: dystopic and liberal posthumanism, and two non-humanist approaches: radical and methodological posthumanism. The author compares and contrasts these models via an exploration of key issues, from human enhancement, to eugenics, to new configurations of biopower, questioning what role technology plays in defining the boundaries of the human, the subject and nature for each. Building on the contributions and limitations of radical and methodological posthumanism, the author develops a novel perspective, mediated posthumanism, that brings together insights in the philosophy of technology, the sociology of biomedicine, and Michel Foucault's work on ethical subject constitution. In this framework, technology is neither a neutral tool nor a force that alienates humanity from itself, but something that is always already part of the experience of being human, and subjectivity is viewed as an emergent property that is constantly being shaped and transformed by its engagements with biotechnologies. Mediated posthumanism becomes a tool for identifying novel ethical modes of human experience that are richer and more multifaceted than current posthumanist perspectives allow for. The book will be essential reading for students and scholars working on ethics and technology, philosophy of technology, poststructuralism, technology and the body, and medical ethics. (shrink)

Genetic and other biotechnologies are starting to impact significantly upon society and individuals within it. Rose and Novas draw on an analysis of many patient groups to sketch out the broad notion of biocitizenship as a device for describing how the empowered and informed individual, group or network can engage with bioscience. In this paper, we examine critically the notion of biocitizenship, drawing on both sociological fieldwork that grounds the debate in the views of a large and varied group of (...) concerned actors. Using work within green politics, we identify shortcomings in the concept of biocitizenship as it has so far been explicated. The value assumptions lying behind an account of biocitizenship, and its tendency to see issues through a reductive lens, are examined. Alternative views of values and goals, which may undermine any alleged rights and duties, are explored using interviews and other ethnographic data that illustrates the complexity of the terrain. The reductive lens of biocitizenship is explored through contrast with the wider scope of concerns emanating from various sources, including many within green politics. If such complexities are not recognised, there is a danger that a concept of biocitizenship may serve to create and amplify inequalities. Problems with identity issues are key: the construction of identity is complex and many groups are explicitly rejecting the ‘biological’ label. We discuss the multiple relations of citizens with the biotech and pharmaceutical industries. Arguably, existing inequalities in power relationships, exploitation, commodification and ownership patterns are being perpetuated in novel ways through the new biosciences. We pose the question of whether it is possible to construct a concept of biocitizenship that overcomes these problems. (shrink)

Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.