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Health policies and the problems they constitute are deeply shaped by multiple publics. In this article we conceptualize health policy counterpublics : temporally bounded socio-political forms that aim to cultivate particular modes of conduct, generally to resist trajectories set by arms of the state. These counterpublics often emerge from existing social movements and involve varied forms of activism and advocacy. We examine a health policy counterpublic that has arisen in response to new forms of HIV public health surveillance by drawing on public documents and interview data from 2021 with 26 stakeholders who were critical of key policy developments. Since 2018, the national rollout of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs in the United States has produced sustained controversies among HIV stakeholders, including among organized networks of people living with HIV. This article focuses on how a health policy counterpublic formed around MHS/CDR and how constituents problematized the policy agenda set in motion by federal health agencies, including in relation to data ethics, the meaningful involvement of affected communities, informed consent, the digitization of health systems, and HIV criminalization. Although familiar problems in HIV policymaking, concerns about these issues have been reconfigured in response to the new sociotechnical milieu proffered by MHS/CDR, generating new critical positions aiming to remake public health. Critical attention to the scenes within which health policy controversies play out ought to consider how (counter)publics are made, how problems are constituted, and the broader social movement dynamics and activist resources drawn upon to contest and reimagine policymaking in public life. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses several articles published within issue on topics related to the study of time in health and illness.

The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals' routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals' rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders. In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues. Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals' data are used. MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes. [ABSTRACT FROM AUTHOR]

Policy PointsMolecular HIV surveillance and cluster detection and response (MHS/CDR) programs have been a core public health activity in the United States since 2018 and are the "fourth pillar" of the Ending the HIV Epidemic initiative launched in 2019.MHS/CDR has caused controversy, including calls for a moratorium from networks of people living with HIV. In October 2022, the Presidential Advisory Council on HIV/AIDS (PACHA) adopted a resolution calling for major reforms.We analyze the policy landscape and present four proposals to federal stakeholders pertaining to PACHA's recommendations about incorporating opt‐outs and plain‐language notifications into MHS/CDR programs. [ABSTRACT FROM AUTHOR]

Maintaining routines of medication dosing requires effort amidst the variabilities of everyday life. This article offers a sociomaterial analysis of how the oral HIV prevention regimen, pre‐exposure prophylaxis (PrEP), is put to use and made to work, including in situations which disrupt or complicate dosing regimes. Other than a daily pill, PrEP can be taken less frequently based on anticipated sexual activity and HIV risk, including 'on‐demand' and 'periodic' dosing. Drawing on 40 interviews with PrEP users in Australia in 2022, we explore PrEP and its dosing as features of assemblages in which bodies, routines, desires, material objects and the home environment interact. Dosing emerges as a practice of coordination involving dosette boxes, blister packs, alarms, partners, pets, planning sex, routines and domestic space, and as an effect of experimentations with timing to suit life circumstances and manage side effects. Dosing is materialised in the mundane; a practice that is made to work, as well as domesticated, in its situations. Although there are no 'simple' solutions to adherence, our analysis offers practical insights into how routine, planning and experimentation come together to capacitate PrEP to work in people's lives, in sometimes unexpected ways, including through adaptations of PrEP dosing. [ABSTRACT FROM AUTHOR]

In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology – in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct. [ABSTRACT FROM AUTHOR]

The authors comment on the ethical framework by M. S. McCoy and colleagues for commercial enterprises. Topics discussed include the practical suggestions by McCoy and colleagues which are assessing the social impact of data practices and ensuring meaningful stakeholder management, political implications of queer data, and the need of commercial and state enterprises to assess the social impact of their data practices and seek stakeholder engagement.

In recent years, applications of big data-driven predictive analytics in public health programs have expanded, offering promises of greater efficiency and improved outcomes. This commentary considers the turn toward predictive modeling in US-based HIV public health initiatives. Through two case studies, we analyze emergent ethical problems and risks. We focus on potential harms related to (1) classifying people living with HIV in public health systems, (2) new ways of combining and sharing individuals' health data that predictive approaches employ, and (3) how new applications of big data in public health challenge the underlying logics and regulatory paradigms that govern data re-uses and rights in public health practice. Drawing on critical technology scholarship, critical bioethics, and advocacy by organized networks of people living with HIV, we argue that stakeholders should enter into a new range of reform-oriented conversations about the regulatory frameworks, ethical norms, and best practices that govern re-uses of HIV public health data in the era of predictive public health interventions that target individuals. [ABSTRACT FROM AUTHOR]

After a decade of oral HIV pre-exposure prophylaxis (PrEP), the next generation of PrEP is being anticipated, including long-acting pills, injections, and implants. The unevenness of international PrEP implementation is increasingly recognised, with successful rollout in some settings and failure in others. There is a need to better understand conditions of PrEP implementation, and its localised (and sometimes unanticipated) effects. Implementation science explores how contexts and health systems shape the successful translation of health interventions. In this essay, we consider how PrEP is evolving and argue for an 'evidence-making' approach in relation to evidence and intervention translations. This approach emphasises how both interventions and their implementation contexts are co-constituted and evolve together. Unsettling the assumed universality of an intervention's effects and potential in relation to its implementation contexts helps to harness the localised possibilities for what PrEP might become. As the next generation of PrEP offers renewed promise, we must explore how PrEP is put to use and made to work in relation to its evolving situations. We urge implementation science to consider implementation processes as 'evidence-making events' in which evidence, intervention and context evolve together. [ABSTRACT FROM AUTHOR]

Through the development and implementation of HIV pre-exposure prophylaxis (PrEP), the characteristics of PrEP users have been configured in a range of ways. Drawing on the concept of 'imaginaries', we consider how clinicians imagine PrEP users and related communities. We conducted 28 semi-structured interviews in 2019–2020 with PrEP-providing clinicians based in New South Wales and Western Australia. Participants included general practitioners, sexual health nurses and sexual health doctors. We inductively developed three themes through a reflexive thematic analysis: 'PrEP users as 99% gay men/MSM', 'The informed and connected PrEP user', and 'Condom users in the PrEP era'. Participants imagined PrEP users primarily as gay men, and so we focused on how gay community was imagined in relation to PrEP users. Users were imagined as supporting one another to use PrEP effectively, but some were imagined as threatening norms of condom use amongst gay community. Analysing clinician imaginaries of PrEP users reveals insight into how clinicians speculate about and engage with changing community norms related to condom use and accessing PrEP. These imaginaries reveal ongoing tensions about who is believed to be best suited to PrEP, and PrEP's impact on norms of conduct in imagined biosocial communities like gay men. [ABSTRACT FROM AUTHOR]

New medicines can transform routines and priorities in clinical practice, but how do clinicians think and feel about these changes, and how does it affect their work? In Australia, the HIV prevention regimen pre‐exposure prophylaxis (PrEP) has been rapidly rolled out, transforming the sexual cultures and practices of users, but less attention has been given to the ways PrEP has reconfigured clinical practice. This paper draws on 28 qualitative semi‐structured interviews conducted between 2019 and 2020 with PrEP‐providing doctors and nurses in Australia to consider how they have affectively engaged with PrEP and put it into practice. Through a reflexive thematic analysis, we explore how clinicians adapted to PrEP, how the field of HIV prevention has been transformed, and how these developments have changed how clinicians approach patients. While the introduction of PrEP was initially received with uncertainty and shock, clinicians described PrEP as enjoyable to prescribe, and better aligned with the moral duties of sexual health consultations than existing HIV prevention strategies like condoms. Through approaching clinical work as an 'affective practice', we argue for attending not only to how new interventions change expectations and practices, but also how these changes are felt and valued by clinicians. [ABSTRACT FROM AUTHOR]

In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants’ accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases. [ABSTRACT FROM AUTHOR]

Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi‐structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood‐borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self‐defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants' accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma. [ABSTRACT FROM AUTHOR]

The health disparities and care needs of lesbian, gay, bisexual, transgender and intersex (LGBTI+) patients are becoming well known. However, healthcare practitioners (HCPs) and medical students across the Global North report limited understanding of this population and express concern about their capacity to meet the needs of LGBTI + patients. To address these gaps in literature and practice, this study draws on qualitative interviews with 12 clinicians and five health professional students exploring their understandings and approaches to LGBTI + inclusive practice in Tasmania, Australia. Through a reflexive thematic analysis, we identified that both practicing clinicians and students did not believe that their training adequately prepared them to treat LGBTI + patients. Other key barriers included reduced awareness of LGBTI + community needs due to the lack of exposure to LGBTI + patients and unfamiliarity with appropriate referral pathways in the regional Tasmanian context. Conversely, factors enabling provision of LGBTI + inclusive care included prior experience working with LGBTI + patients and establishing a network of supportive colleagues and local services. Participants who identified as LGBTI + themselves saw their personal experiences as a strength in supporting LGBTI + patients. While awareness of LGBTI + inclusive health practice is increasing, Tasmanian practitioners report insufficient training and practical difficulties with referral as key challenges. [ABSTRACT FROM AUTHOR]

The article discusses that Sociologists have always had rich and sometimes controversial material to explore within the ‘contentious epistemological space' of health and medicine, but the field of trans1 health has come to represent one of most highly contested of these domains. It mentions that it seems almost an understatement to suggest that these conflicts are intensifying, with ever more distressing and harmful effects for trans people around the world.

In the United States, clinical HIV data reported to surveillance systems operated by jurisdictional departments of public health are re-used for epidemiology and prevention. In 2018, all jurisdictions began using HIV genetic sequence data from clinical drug resistance tests to identify people living with HIV in "clusters" of others with genetically similar strains. This is called "molecular HIV surveillance" (MHS). In 2019, "cluster detection and response" (CDR) programs that re-use MHS data became the "fourth pillar" of the national HIV strategy. Public health re-uses of HIV data are done without consent and are a source of concern among stakeholders. This article presents three cases that illuminate bioethical challenges associated with re-uses of clinical HIV data for public health. We focus on evidence-base, risk-benefit ratio, determining directionality of HIV transmission, consent, and ethical re-use. The conclusion offers strategies for "HIV data justice." The essay contributes to a "bioethics of the oppressed." [ABSTRACT FROM AUTHOR]

The broadening of access to HIV pre-exposure prophylaxis (PrEP) in Australia has rekindled debates about which types of clinicians are best suited to deliver HIV prevention innovations: specialist HIV services or primary care physicians and general practitioners (GPs). We conducted 21 semi-structured qualitative interviews in 2017 with Australian HIV sector experts working across policy, advocacy, clinical service provision, research, and health promotion. These interviews took place before a national policy commitment to subsidising access to PrEP was achieved. We explored how participants conceptualised PrEP, patients and GPs at this key turning point in the history of HIV prevention. Participants expressed varied views regarding GPs' anticipated ability to successfully navigate the potential complexities associated with PrEP roll-out. While participants were supportive of greater patient access to PrEP, they expressed concerns about non-specialist GPs' cultural competence and expertise regarding sexuality and clinical practice, and the potential for patients to experience discrimination and homophobia from non-expert GPs. This study has broad implications for thinking about experts and expertise, the implementation of previously specialised medicine into mainstream settings, and the anticipated challenges of LGBTIQ+ inclusive healthcare. [ABSTRACT FROM AUTHOR]

Participant recruitment for qualitative research often offers incentives (honoraria; financial compensation) to increase participation and to recognise lived expertise and time involved in research. While not necessarily a new concern for survey and other quantitative based research, 'spam', 'bot', and other inauthentic forms of research participation has rarely been an apparent issue for qualitative research, given it often involves levels of interaction with potential participants prior to the conduct of in-depth interviews and other methods of data generation. This is no longer the case. A troubling new occurrence has meant that recruitment calls for qualitative research with incentives on public-facing social media have attracted 'imposter' expressions of interest and research participation. In this commentary, we explore this challenge that goes beyond research integrity. In particular, we consider the risks of employing strategies to screen for legitimate participants and the importance of building trust and maintaining community engagement. [ABSTRACT FROM AUTHOR]

The article presents the response of the authors to comments on their article "Reassessing the Ethics of Molecular HIV Surveillance (MHS) in the Era of Cluster Detection and Response (CDR): Toward HIV Data Justice." They reiterate their argument concerning consent for reuse of HIV surveillance data. They cite the need for further social, behavior and ethical research MHS and CDR is needed.

In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families' own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right. [ABSTRACT FROM AUTHOR]

In 2018, the Australian Government adopted an 'opt-out' strategy to increase participation in My Health Record (MHR), the national digital patient record system. Opt out was rationalised through discourse on the universal right to health. Media controversy ensued due to privacy fears, security and commercial exploitation of patient information. LGBT community organisations warned that people with complex health needs should consider their privacy and legal situation when deciding whether or not to opt out of MHR. With reference to the health needs of sexuality and gender diverse people, we examine MHR's rights universalism, possessive individualism, and state-based rationalisation of health governance. MHR hails all but no-one in particular, erasing diversity and straightwashing data medicine. It is a technological solution to state-based imperatives for health governance, an emphasis that does not serve minority communities or address health needs that attract stigma and prejudice. We counterpose these effects with citizenship framings seated in critical approaches to data assemblages and sexuality and gender diversity. We suggest ways in which data medicine, of which MHR is but one example, can be made more relevant and effective for individuals and communities whose healthcare is poorly served by mainstream health systems. [ABSTRACT FROM AUTHOR]

AbstractIn 2022, a global outbreak of mpox (formerly ‘monkeypox’) emerged in non-endemic countries, including Australia, predominantly affecting gay, bisexual and other men who have sex with men. Public health advice on transmission and isolation emerged rapidly from different sources, sometimes conflicting and producing uncertainty. Using the concept of ‘counterpublic health’, which acknowledges the incorporation of official science and experiences of affected communities into embodied practice, this paper investigates how people affected by mpox in Australia managed risk of transmission and navigated self-isolation. In-depth interviews were conducted with 16 people: 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay and bisexual men living in Australia. Participants thought critically about public health advice, often finding it restrictive and unresponsive to the needs of people with mpox. Participants’ decisions about reducing mpox risk and isolating often drew on experiences with other infections (i.e. HIV; COVID-19) and were made collaboratively with the people closest to them (e.g. partners, friends, family) to sustain relationships. Future public health responses to infectious disease outbreaks would benefit from identifying more opportunities to formalise and embed mechanisms to obtain feedback from affected communities so as to inform responses. [ABSTRACT FROM AUTHOR]

Some early English language news coverage of COVID-19 epidemiology focused on studies that examined how SARS-CoV-2 (the coronavirus that causes COVID-19) was evolving at the genetic level. The use of phylogenetic methods to analyse pathogen genetic sequence data to understand disease dynamics is called 'molecular' or 'genomic' epidemiology. Many research groups in this subfield utilise open science practices, which can involve the circulation of early unreviewed findings on publicly-accessible venues online. From March to May 2020, media outlets covered early SARS-CoV-2 genomic studies that claimed to have discovered types of SARS-CoV-2 that had mutated to be more transmissible. We use methods from Science and Technology Studies (STS) to examine three cumulative cases in which unripe facts about SARS-CoV-2 genomics moved out of scientific publics and into mainstream news. The three cases are: (1) 'A More "Aggressive" Strain of SARS-CoV-2?', (2) 'Eight SARS-CoV-2 Strains?', and (3) 'A "More Contagious," "Mutant" Strain?' In each case, findings were called into question and reporters' framing was overly sensational. We interpret the COVID-19 pandemic as a 'stress-test' for open science practices, and argue that it is important for stakeholders to understand changes in scientific publication and dissemination processes in the wake of the pandemic. [ABSTRACT FROM AUTHOR]