Alan Petersen’s research while affiliated with Monash University (Australia) and other places

Diagnoses of infectious diseases are being transformed as mass self-testing using rapid antigen tests (RATs) is increasingly integrated into public health. Widely used during the COVID-19 pandemic, RATs are claimed to have many advantages over 'gold-standard' polymer-ase chain reaction tests, especially their ease of use and production of quick results. Yet, while laboratory studies indicate the value of RATs in detecting the SARS-CoV-2 virus antigen, uncertainty surrounds their deployment and ultimate effectiveness in stemming infections. This article applies the analytic lens of biological citizenship (or bio-citizenship) to explore Australia's experience of implementing a RAT-based mass self-testing strategy to manage COVID-19. Drawing on Annemarie Mol's (1999, The Sociological Review, 47(1), 74-89) concept of ontological politics and analysing government statements, scientific articles and news media reporting published during a critical juncture of the strategy's implementation , we explore the kind of bio-citizenship implied by this strategy. Our analysis suggests the emergence of what we call liminal bio-citizenship, whereby citizens are made responsible for self-managing infection risk without the diagnostic certitude this demands. We

Patient advocates and activists are increasingly relying on online health information that can assist them to manage their health condition. Yet once online, they will confront diverse information whose veracity and utility are difficult to determine. This article offers a sociological analysis of the practical methods, or heuristics, that patient advocates and activists use when making judgements about the credibility and utility of online information. Drawing on the findings from interviews with fifty Australian patient advocates and activists, it is argued that these individuals' use of these heuristics reflects their hopes that information can help them manage their condition which may, in some cases, override fears and uncertainties that arise during searches. The article identifies the common ‘rules-of-thumb’—or what we call the ‘heuristics of hope’—that patient advocates/activists may use to make judgements and highlights the dangers of over-reliance on them, especially regarding clinically unproven, potentially unsafe treatments. Analyses of the heuristics of hope, we conclude, can assist in understanding the dynamics of decision-making and the role that affect plays in online patient communities which is crucial in an age characterised by the rapid circulation of emotionally charged messages, often based on hope.

Diagnosis is pivotal to medicine's epistemic system: it serves to explain individual symptoms, classify them into recognizable conditions and determine their prognosis and treatment. Medical tests, or investigative procedures for detecting and monitoring disease, play a central role in diagnosis. While testing promises diagnostic certainty or a definitive risk assessment, it often produces uncertainties and new questions which call for yet further tests. In short, testing, regardless of its specific application, is imbued with meaning and emotionally fraught. In this article, we explore individuals' ambivalent experiences of testing as they search for diagnostic certainty, and the anxieties and frustrations of those for whom it remains elusive. Combining insights from sociological work on ambivalence and the biopolitics of health, and drawing on qualitative interviews with Australian healthcare recipients who have undergone testing in the context of clinical practice, we argue that these experiences are explicable in light of the contradictory impulses and tensions associated with what we term ‘bio-subjectification’. We consider the implications of our analysis in light of the development of new tests that produce ever finer delineations between healthy and diseased populations, concluding that their use will likely multiply uncertainties and heighten rather than lessen anxieties.

Alan Petersen (AP) and Kiran Pienaar (KP): Thank you, David, for agreeing to share your perspectives in this interview. It is a pleasure and honour to have this opportunity to engage with your insights and scholarly contributions on surveillance medicine and the sociology of diagnosis. Looking back to your early contributions on surveillance medicine, these seem to anticipate recent diagnostic trends. What, if anything, has changed in the interim period?

Kiran Pienaar (KP) and Alan Petersen (AP): Thank you, Annemarie, for agreeing to share your perspectives in this interview. We are delighted to have this opportunity to engage with your insights and scholarly contributions on the sociology of diagnosis. In 2011 you co-edited a special issue of Social Science and Medicine entitled ‘Toward a Sociology of Diagnosis’ in which you called for sociologists to pay more attention to medical diagnosis as a central practice and classification tool of medicine. In the introduction, you note that ‘diagnosis has had an absent presence in the sociology of health and illness’ (Jutel & Nettleton, 2011, p. 793). Do you think this is still the case or has the field developed since then to attend more closely to the social issues and processes at work in diagnosis? In your view, does diagnosis merit continued/renewed sociological attention? And if so, why?

Testing—involving the analysis of blood samples or scans, colonoscopies, biopsies, or other procedures—is frequently the front door to healthcare. It often leads to further tests or treatments, perhaps hospitalisation, and sometimes unwelcome news about one’s future. Consequently, being tested is fraught with meaning and is likely to evoke strong emotional responses in those subject to its regimes, including anxiety, fear and uncertainty. In short, however one looks at it, testing is highly consequential and as much a socio-political phenomenon as a medical one. This special issue explores the socio-cultural, politico-economic, policy and regulatory factors shaping the practices of testing in healthcare, and the implications of testing. Before we introduce the articles and the interviews, we begin with some observations on recent trends in the practices of testing and offer a broad perspective on this field, drawing on ideas from science and technology studies (STS) and insights arising from our workshop. The topic of testing in healthcare is not new in sociology and other social sciences, and we acknowledge the various important contributions made by colleagues to date, including investigations of population-based screening and routine diagnostic practices in the clinic, specifically prenatal genetic testing and direct-to-consumer genetic testing (e.g., Armstrong & Eborall, 2012; Hallowell, 1999; Jutel, 2011, 2019; Mol, 2000, 2002; Tutton & Prainsack, 2011). This work has focused on discrete diseases/conditions or specific populations, screening and/or diagnostic practices, and the experiences of those who receive or deliver diagnoses. However, there are other issues of great significance which are rarely if ever explored in the literature that we wish to highlight here.

For patient communities, digital media have dramatically transformed the options for action. This includes working collectively to change policies in ways that would have been difficult, if at all possible, before the internet. Yet, to date, the impacts of patients’ growing use of digital media on their sense of collective agency have been little explored. Drawing on the findings from an Australian study on patients’ use of digital media to access treatments (involving 50 interviews with participants from HIV/AIDS, breast cancer and neurodegenerative communities) and using a governmentality lens, this article sheds light on the changing character of patients’ sense of agency in an age of digital media. We identify a shift in patients’ conceptions of their agentic selves associated with the growing use of these media – from ‘activists’ to ‘advocates’ – and consider the implications for critical public health. As we argue, this ‘digital self-advocacy’ is manifest in patients’ accounts of how they use digital media to achieve their goals and reflects the responsibilisation that is a hallmark of neoliberal governance. We suggest that digital self-advocacy offers a restricted vision of patient agency that limits rather than facilitates actions needed to respond to crises and to advance health justice. In our conclusion we consider whether the context and the nature of a condition or disease may also have a bearing on patients’ sense of agency in an age of digital media, making reference to patient responses to a new illness phenomenon dubbed ‘long COVID-19ʹ.

Petersen et al. (Stem cell tourism and political economy of hope. Basingstoke: Palgrave Macmillan, 2017) follow people from one clinical location to another in pursuit of stem cell treatments that are available in some parts of the world but not others.

Digital media offer the chronically ill, especially those who experience related isolation, unparalleled opportunities to connect with others. This article asks, how do these individuals ascribe meaning to and use these media to manage their condition and related isolation? Using the concepts of affordance and emotional community, and drawing on the findings from an Australian study on patients’ use of digital media, we examine individuals’ ambivalent ascriptions of media, which are both feared and distrusted for the risks they present and embraced as invaluable tools of social connection. We argue that this ambivalence is explicable in terms of the communities to which the chronically ill belong which are founded on strong emotional bonds. In a context in which individuals tend to feel isolated through pain and/or stigmatisation, digital media may offer powerful means for sharing and affirming their experiences, the subjective benefits of which may outweigh the perceived risks. The article discusses the functions and features of digital media that the chronically ill value and distrust and concludes by considering the implications of our analysis for strategies to address the needs of people who feel isolated as a consequence of their condition.

Medical testing promises to establish certainty by providing a definitive assessment of risk or diagnosis. But can those who rely on tests to offer advice or make clinical decisions be assured of this certainty? This article examines how Australian health professionals, namely clinicians, microbiologists, specialist physicians and health policymakers, delineate the boundary between certainty and uncertainty in their accounts of medical testing. Applying concepts from science and technology studies, and drawing on qualitative data from a sociological study of testing in Australian healthcare, we consider how professionals ascribe meaning to testing and test results. As we argue, for these health professionals, the 'evidence' that testing generates has ambiguous ontological significance: while it promises to provide diagnostic certainty and clear direction for advice or treatment, it also generates uncertainties that may lead to yet further tests. Our analysis leads us to question a key premise of testing, namely that it is possible to establish certainty in medical practice via the measurement of individual health risks and disease markers. Against this dominant view, the responses of the health professionals in our study suggest that uncertainty is intrinsic to testing due to the constantly changing, unstable character of 'evidence'. We conclude by considering the implications of our analysis in light of healthcare's increasing reliance on sophisticated technologies of 'personalised' testing using genetic information and data analytics.