This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (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)

Since the completion of the Human Genome Project, personalized medicine has become one of the most influential visions guiding medical research. This paper focuses on the politics of personalized medicine in psychiatry as a medical specialty, which has rarely been investigated by social science scholars. I examine how this vision is being sustained and even increasingly institutionalized within the mental health arena, even though related research has repeatedly failed. Based on a document analysis and expert interviews, this article identifies discursive (...) strategies that help to sustain this vision and its promises: “complexity talk,” “extension,” and “boundary work.” These practices secure its plausibility, protect it from criticism, and maintain stakeholder support. (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 this essay, we defend the design of the Salk polio vaccine trial and try to put some limits on the role schemata should play in designing clinical research studies. Our presentation is structured as a response to de Freitas and Pietrobon who identified the CONSORT statement as a schema that would have, had it existed at the time, ruled out the design of the Salk polio vaccine trial of 1954 in favor of a completely randomized controlled clinical trial. We (...) argue that large-scale public health interventions often require evidence beyond simple efficacy, the limit of what an RCT can provide, and that the design actually adopted for the Salk trial represented a reasonable—albeit imperfect—compromise. This is of more than historical interest in that many contemporary studies are of the scale and scope to require a more pragmatic, rather than explanatory, approach to study design. (shrink)

Interview on the commodified body with Donna Dickenson by Alana Cattapan.

The phenomenon of the quantified self, which is especially addressed by sociology and medical humanities, is still quite disregarded by philosophy. Yet, the philosophical issues it raises are various and meaningful, from the realm of epistemology to the realm of ethics. Moreover, it may be read as a key symptom to investigate the complex technological era in which we live, starting from the meaning of contemporary technology itself from a philosophical perspective. I shall focus on one of the epistemological issues (...) raised by the phenomenon of the quantified self by arguing that it may be read in terms of epistemological anarchism, which also leads to other epistemological issues, such as a possibly detectable crisis of the notions of knowledge in general and science in particular as founded on the relationship between particularity and universality, as well as between reality and ideality. I shall select cases that are peculiarly representative of the founding epistemological stance I shall focus on. Yet, the reason why they deserve special attention is that they are also representative of an increasingly widespread attitude characterising not only the community of the quantified self but also, at least to some extent, anyone of us who may happen to use technologies to try to self-diagnose. (shrink)

The notion of je ne sais quoi, whose rise characterises the decades in which the first scientific revolution marks a turning point in Western culture, tries to identify the human capacity for grasping what exceeds knowledge resulting from logos. But the further steps of the triumph of logos, starting from the second scientific revolution and its further developments, increasingly determine its fall. Moreover, th e recent history of Western culture may be read as follows: we have been increasingly entrusting our (...) understanding of what is and our prediction of what will be to an even more restricted form of rationality coinciding with logos, first, by progressively restricting logos to computation and, second, by progressively externalising computation from our minds to technologies, specifically algorithmic technologies. As such, should we think that computation is increasingly occupying the realm of je ne sais quoi by increasingly reckoning the unreckonable? The answer seems affirmative. In what follows, I shall critically focus on a promising case in point to try to understand the radical move from je ne sais quoi to computation: the case of the quantified self, which is addressed by medical humanities and sociology, but quite disregarded by philosophy – alternatively, I shall at least try to introduce the reasons why the case of the quantified self deserves a specifically philosophical study, starting from aesthetics and epistemology. (shrink)