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."
Background: HIV pre-exposure prophylaxis (PrEP) has been rapidly implemented in Australia, initially through restricted access in demonstration studies, and then through prescribing across sexual health clinics and general practice settings. In 2018, PrEP was publicly subsidised for people with Medicare (universal health insurance for citizens, permanent residents and those from countries with reciprocal arrangements). There is little research examining the experiences of PrEP providers in Australia, and existing research has been primarily conducted before public subsidy. Methods: In this qualitative study, we examine the challenges that have emerged for PrEP-providing clinicians after public subsidy for PrEP was introduced. We conducted 28 semi-structured interviews in 2019-20 with PrEP providers in two Australian states, and analysed data thematically. Participants included general practitioners (GPs), sexual health nurses and sexual health physicians. Results: Sexual health services have been reconfigured to meet changing patient demand, with an emphasis on ensuring equitable financial access to PrEP. Restrictions to nurse-led PrEP frustrated some participants, given that nurses had demonstrated competence during trials. GPs were believed to be less effective at prescribing PrEP, but GP participants themselves indicated that PrEP was an easy intervention, but difficult to integrate into general practice. Participants expressed discomfort with on-demand PrEP. Conclusions: Our findings indicate that supporting ways for patients without Medicare to access PrEP inexpensively, advocating for nurse-led PrEP, and developing guidelines adapted to general practice consultations could ensure that PrEP is delivered more effectively and equitably. Additionally, PrEP providers require encouragement to build confidence in providing on-demand PrEP.
HIV pre‐exposure prophylaxis (PrEP) has been embraced in Australia, making PrEP available with public funding to people at risk of HIV. Here, we consider the associated ‘problems’ of reduced condom use and sexually transmissible infections (STIs), as seen by HIV professionals. Twenty‐one interviews were conducted during May‐August 2017. All agreed that PrEP was a valuable addition to HIV prevention, but their views about reduced condom use and STIs were variable. Using poststructural policy analysis, three main stances were identified: (1) Concerned/alarmed. PrEP was seen as causing reduced condom use, STIs and antibiotic resistance, posing threats to the general population; (2) Neutral/normalising. Stakeholders emphasised that condom use was declining and STIs increasing independently of PrEP, and that PrEP was simply a new tool to be accommodated; (3) Optimistic/critical. PrEP was seen as diminishing fear of HIV and engaging users in more frequent testing and treatment that could lead to declining STI rates. What linked all three stances was the selective performance of evidence, deploying a mixture of personal experience, clinical observations, behavioural data and epidemiology. Anticipating possible futures through evidence‐making suggested practical, political and moral consequences for what PrEP could become. We encourage others to consider these consequences with care.
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 reuses of HIV public health data in the era of predictive public health interventions that target individuals.
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