Ethics, Health Data, and Bio-Citizenship
Adriana Petryna first introduced the term “biological citizenship” in her ethnography of the aftermath of the Chernobyl post-disaster emergency, Life Exposed [Petryna A. 2002. Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton University Press.]. As stated by Rose and Novas, biological citizenship can be defined as an active form of citizenship that produces new forms of belonging, claims to acknowledgement of experiences, and access to resources revolving around biological and medical claims. Within this frame, the “emergency” refers to those “emerging forms of life” and introduces a new element into the philosophical, ethical and sociological reflection: something, which arises from the intertwining of modes of theoretical thinking and moral agency pertinent to different areas – medical, legal, economic, political, moral – and is not directly postulated by any of them. Something, whose characteristics can be identifiable, but whose result cannot be predicted. Several factors have contributed to defining the concept of biological citizenship. These include:
- A nosological expansion leading to a proliferation of disease categories in the biomedical field;
- New forms of bio-sociality emerging in connection with the increase in rare diseases;
- The consolidation of new biopolitical systems and new forms of governance;
- The rise of new political and moral economies of hope;
- An increased relevance of patient associations in the decision making
However, biological citizenship should not be constructed merely as a resurgence of the medicalization of life (Foucault), or a form of liberalization and privatization of eugenics (Habermas). In this context, this special issue aims at investigating the multidisciplinary background of the expanding moral claim to bio-sociality and bio-citizenship. As a matter of fact, being a bio-citizen carries an underlying demand for more suitable public policies and socio-economic rights to shape the universalization of fragility and vulnerability as human conditions in contemporary society. On the one hand, bio-citizenship may therefore be viewed as a proactive proposition for patient-centred healthcare within an enlarged framework of cultural and political meanings: the patient is no longer a subject, who happens to suffer from a specific impairment at a specific moment in time; rather, being a patient is a universal condition, shared by all human beings. The idea is to move from a generally negative perception of the term “patient” to a neutral or positive perception of the same concept. On the other hand, however, biological citizenship also implies an underlying and constant connection between the patient status and the involvement of health data in order for patient-centred technologies to run efficiently. This entails new (cyber) risks and vulnerabilities that might not only impoverish the empathic and emotional quality of the care relationship, but also favour a concept of democratic citizenship based on a Big-data-oriented sovereignty, thus paving the way from bio-citizenship to bio-data-citizenship. This idiosyncrasy is very evident in the ongoing global experience of the COVID-19 pandemic. We are learning how contingent the necessity is to rethink the link between ethics, Big data, patient empowerment, and healthcare technology.
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All proposed papers must be submitted in electronic form (PDF format) to the Editors of this CFP. For further information as well as the submission of the paper, please contact:
Antonio Carnevale (firstname.lastname@example.org)
Emanuela Tangari (email@example.com)
***The special issue will be a scientific communication activity of the PERSIST project (Patients-centred SurvivorShIp care plan after Cancer treatments based on Big Data and Artificial Intelligence technologies) funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 875406 https://cordis.europa.eu/project/id/875406/it