Bioconstitutional Imaginaries and the Comparative Politics of Genetic Self-knowledge

Abstract

Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing.

A comparative analysis of data governance: Socio-technical imaginaries of digital personal data in the USA and EU (2008–2016)

“…Between 2008 and 2016, the primary regulator of personal data in the United States was the Federal Trade Commission (FTC), reflecting the "market model" that dominates the socio-technical settlement in the United States (Hurlbut, Metzler, Marelli, and Jasanoff, 2020). The FTC's main enforcement tool was outlined in Section 5 of the Federal Trade Commission Act which "prohibits 'unfair or deceptive acts' or practices in or affecting commerce" (Sotto and Simpson, 2014: 191).…”

“…In the EU trade-off, citizen rights were dominant, although there were deliberate attempts to "design future" for the commercialization of personal data (Pickersgill, 2011). The rights-based trade-off was reinforced by the cultural and political significance accorded to data protection by EU institutional stakeholders and afforded by a specifically EU constitutional framework (Hurlbut, Metzler, Marelli, and Jasanoff, 2020). Harmonization was framed as both a problem and solution to the challenges presented by personal data; in short, consistent data protection regulation was seen to construct a specifically European imaginary that would lead to significant economic benefits.…”

Constitutionalism at the Nexus of Life and Law

“…Biocapitalism is part of the fabric of research and development and hence a feature of all modern industrial societies. The forces of capitalism apply not only to well-characterized, translated products like genetic tests (Hurlbut et al 2020) but even to the so-called basic research with human embryos (Jasanoff, Hurlbut, and Saha 2019). Nonetheless, although the imaginary of science as the agent best able to fulfill core obligations of states to citizens, via the market, increasingly holds sway across industrial nations, it takes different forms in different contexts because, in each, it is inflected with preexisting constitutional constructions of state–citizen relations.…”

“…For instance, while the ontological and legal status of human–animal chimeras have proved to be unsettling in all three countries, what is taken as unsettling differs across them, as do the governance regimes that these constructs unsettle, the forms of authority invoked in efforts to resolve the uncertainties, and the notions of what constitutes an adequate resolution to render the entities governable (Hinterberger 2020; Jasanoff 2005b, 2011). Similarly, whereas both the United States and Germany have advocated some regulation of genetic tests in the name of protecting citizens’ liberty and autonomy, interpretations of how genetic self-knowledge relates to individual autonomy are radically different, as are corollary notions about the appropriate role of the state in safeguarding autonomy, and the extent of the state’s reliance on science to ensure that such conditions are met (Hurlbut et al 2020).…”

“Our Blood Itself Is Disabled!”: Haemoglobinopathy, Certificate Anxiety, and Contested Constitutionalism in Disability Legislation in India

“…Anthropologist Adriana Petryna (2002) describes 'biological citizenship' as the constitutional rights of citizens that are rooted in collective biological conditions. Far from illuminating antagonisms between established theoretical frameworks which are critical for understanding complex sociotechnical realities, this research article instead offers insight into the productive tensions that emanate from the frictions between bioconstitutionalism and biological citizenship in India that determine how biomedicine, the State, and citizens interact (Hurlbut et al 2020) on issues around disability. In the remainder of this article, I demonstrate that the contestation of the bioconstitutional reframing of genetic blood disorders as subject to the standard of 'benchmark disability' stems from the biological citizenship asserted by patient communities demanding constitutional recognition of their disabled embodiments.…”