Molecular Sovereignty: Building a Blood Screening Test for the Brazilian Nation

This article interrogates the relationship between the development of national diagnostic technologies and the exercise of sovereignty, by analysing a Brazilian project to produce a nucleic acid test (NAT) for the country’s blood screening programme. The concept of ‘molecular sovereignty’ is proposed to demonstrate that exercising sovereignty demands not only technological resources but also a sufficiently powerful and national imaginary to support local knowledge production as a means of advancing national healthcare priorities. First, this research article contextualises the political importance of blood safety for Brazil during its transition to democracy in the 1980s and the creation of its universal healthcare system. Then, it investigates how adopting the NAT led the state to invest in the production of a national technology. Third, the article unpacks the diagnostic test to consider how certain aspects of the project might ultimately strengthen the ability of global capital to cross national boundaries and create new markets. Lastly, it discusses how the project ended up creating a centralised and ‘closed’ system to avoid leaving the country vulnerable to the entry of global diagnostic companies. This case demonstrates how the molecularisation of blood, through the construction of a unified healthcare system driven by the constitutional right to health, can be deployed to construct imagined communities on the scale of a nation.

Moments of Uncertainty: Exploring How an App-Based Oral HIV Self-Testing Strategy Fits in Communities ‘Living Under’ HIV Risk

Feasibility and acceptability research for HIV self-testing (HIVST) often emphasises the importance of good test conduct and correct test interpretation for knowing one’s HIV result while overlooking the ways in which different uncertainties and meanings emerge around testing. Using empirical examples from a quantitative study assessing an app-based strategy in Cape Town, South Africa, this research article explores the practice of HIVST and how people deal with uncertainties while using the app in question, named ‘HIVSmart!’. We use the concept of ‘living under’ to explore the practices of HIV testing for those who fit the definition of being ‘at risk’ of HIV (note that an individual’s HIV status must be unknown in order for them to fit this definition) and to understand how an app-based HIVST strategy fits within these practices. We show how the app and oral self-test—as well as knowledge around HIV risk behaviours, comparisons between different testing methods, and the guidance and presence of healthcare staff—alleviate as well as generate uncertainty and constitute HIV status as an ongoing process. The effective implementation of new strategies for HIVST requires consideration of multiple aspects of the testing process, including local understandings of HIV risk, access to healthcare staff, and the meaning of certain test methods within a particular context.

Introduction: Diagnostics, Medical Testing, and Value in Medical Anthropology

Introduction to the Special Issue on Diagnostics, Medical testing, and Value

The Testing Database as Pandemic Technology: Reflections on the COVID-19 Response in India

This article examines the COVID-19 response in India, viewing it as deeply enmeshed in the dynamics of the ‘database’ as an emerging technology of governmentality. Databases aim to translate entire populations into units of information abstracted from social identities and local specificities. In the context of the coronavirus pandemic, bureaucratic state systems attempt to manage and respond to the health crisis via databases collating testing data across the country. Problematising COVID-19 testing databases, we delve into the logic of database governance. We find that as a tool of governance the database falters in its attempts to compress complex identities and locations into de-contextualised units of information. As the complexity of lived reality interrupts the logic of databasing, state discourse on ‘unintended consequences’, ‘leakages’, ‘duplication’, and ‘reconciliation’ processes in the management of databases abounds and the ambivalence of databases becomes manifest in the COVID-19 response. In this article, we use secondary data to understand how testing databases intervene and interact with complex realities to establish bureaucratic order around a pandemic. We posit that COVID-19 testing databases should be understood as being embedded in emerging database governmentalities that supplant care of the population with the maintenance of databases.

Detecting Diabetes Risk: Philanthrocapitalism, Diagnostic Innovation and Epistemic Power in Mexico

An expanding class of mega-philanthropic institutions, most often based in the Global North but increasingly based in the Global South, has emerged as a driving force in global health. Among them, the Carlos Slim Foundation—located in Mexico City and funded by Mexican-born telecommunications tycoon Carlos Slim Helú—has spearheaded an ongoing strategy to boost chronic disease prevention in Mexico, principally through the development and promotion of a series of cutting-edge diagnostic tests. In this research article I trace the Foundation’s efforts to develop these technologies and integrate them into Mexican health policy. With these technologies serving as powerful conduits of the Foundation’s epistemic power, I show that Carlos Slim’s philanthropic investments are reshaping goals in the public health field and fostering new understanding of chronic disease risk among health officials and experts in Mexico and beyond.

Out of Compassion of Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial

This article examines the intersection of compassion and rights, and how the two concepts are constituted and wielded in the context of human clinical trials. Doron, an ALS patient who was recruited to a clinical trial, believed that he had the right to post-trial treatment according to the wording of an informed consent form he signed before joining the trial. However, the biotech company sponsoring the trial instead offered him ‘compassionate use’ access, i.e., access at its discretion rather than as a legal obligation on its part. I argue that under a ‘bioeconomy of value’, the human clinical trial regime has been subordinated to two competing discourses: that of compassion and that of patients’ rights. Both are interpreted and deployed differently by the different stakeholders, namely the patient, the biotech company, and the medical establishment. I argue that the adoption, by bioeconomy actors, of a social value discourse of compassion is designed to preserve a hierarchy that deprives the patient of their power and their rights. Simultaneously, this practice highlights the power of the biotech industry as a moral partner and ‘saviour’ in its relationship with patient organisations and its role as a medical–scientific actor in the Israeli healthcare system.

“Doing it Our Way” Participation and Kinship in Traditional Surrogacy Narratives in Aotearoa New Zealand

The practice of traditional surrogacy gives rise to multiple discourses around women’s autonomy and kinship practices globally. In the Aotearoa New Zealand context, traditional surrogacy (where the surrogate donates her own egg as well as gestating the foetus) is legal only on an altruistic basis. Furthermore, it is subject to neither medical nor state oversight, unlike gestational surrogacy which is heavily regulated. Drawing on three years of ethnographic research, this article focuses on both traditional surrogates in Aotearoa New Zealand who have children of their own and those who have chosen a childfree life. Their narratives reveal multilayered motivations that align with and diverge from the ‘help’ narrative often associated with altruistic surrogacy. By drawing on and contributing to current debates on surrogacy globally, I show that traditional surrogates take on their role with clear ideas about kinship and different interpretations of reproductive participation. Their narratives bring to the fore the under-researched topic of traditional surrogacy, and in particular of women who do not want children of their own but choose to donate their eggs and gestate the foetus for another woman. I argue that their negotiation of stigma to make/resist kin disrupts pervasive heteronormative modes of kinship.

The Grammar of Leprosy: Temporal Politics and the Impossible Subject

This research article critically interrogates the implications and unintended consequences of the World Health Organization’s purported elimination of leprosy as a public health problem. I explore how leprosy has been portrayed (for nearly a century) as something from the past, recalcitrantly lingering on into the present, but surely about to be gone—a temporal framing I call the ‘grammar of leprosy’. I recount the experiences of Daniel, my interlocutor in Tanzania, whose existence became a problem for his doctors. This problem they ultimately resolved by fabricating negative test results in order to record what they already knew: leprosy had been eliminated. I also analyse how researchers working for Novartis (the supplier of leprosy’s cure) continue to push for an always imminent ‘elimination’, while field researchers repeatedly caution about the potential problems of this approach. Finally, I reveal how the grammar of leprosy operates through a complex set of temporal politics, pulling into its orbit and being enabled by multiple interwoven temporalities. I conclude that—due to this grammar, the impossible subjects it produces, and the temporal politics through which it operates—leprosy elimination campaigns may have dire consequences for the lives of people with leprosy today, impeding rather than enabling treatment.

Breathing and Dying in 2020

Every ethnographer balances participation and observation during fieldwork in their own unique way. For those whose primary role is participation, field notes represent an avenue for reflecting on trends that may not be immediately obvious when one is mired in the ethnographic setting. The author, an emergency physician and anthropologist, reflects on racial injustices and transformations in biomedical rituals to do with death and dying, from the front lines of the COVID-19 pandemic.

(In)Visible Disease: Motions and Emotions Engendered by Papers and Diagnostics of People Accessing Healthcare in Burkina Faso

Within the last decade, challenges of diagnosis have emerged on the global health agenda, accompanied by an expansion in the use of point-of-care and rapid detection devices in low-resource contexts where laboratory facilities are scarce. Few studies have explored how these changes are shaping people’s diagnostic journeys and their modes of accessing such technologies. In this paper I show how sick people and their families in a peri-urban area in Burkina Faso attempt to access diagnostic technologies and make themselves visible to the healthcare system through papers. In this context, I show how referral papers and diagnostic papers take on significance for people as they attempt to access care and diagnostic technologies and ‘carry’ knowledge between different levels of the healthcare system. The use of papers is often an uncertain undertaking, as they remain unintelligible to the sick and the layperson. I highlight how the form of the papers makes a crucial difference to the ways that sick people are able to use them. Papers and diagnostic technologies present both opportunities and challenges, and simultaneously engender hope, uncertainty, disappointment, and despair for the sick seeking a cure. Uncertainties, especially financial ones, arise with the possibility of new referrals and diagnostic tests, and along the way many give up or are immobilised when faced with diagnostic ambiguity.