Background There has been growing interest in the use of incentives to increase the uptake of health-related behaviours and achieve desired health outcomes at the individual and population level. However, the use of incentives remains controversial for ethical reasons. An area in which incentives have been not only proposed but used is HIV prevention, testing, treatment and care—each one representing an interconnecting step in the "HIV Cascade." Methods The main objective of this qualitative case study was to document the experiences (...) of health care and service providers tasked with administrating incentivized HIV testing, treatment, and care in British Columbia, Canada. A second objective was to explore the ethical and professional tensions that arise from the use of incentives as well as strategies used by providers to mitigate them. We conducted interviews with 25 providers and 6 key informants, which were analyzed using applied thematic analysis. We also collected documents and took field notes. Results Our findings suggest that incentives target populations believed to pose the most risk to public health. As such, incentives are primarily used to close the gaps in the HIV Cascade by getting the "right populations" to test, start treatment, stay on treatment, and, most importantly, achieve viral suppression. Participants considered that incentives work because they "bring people through the door." However, they believed the effectiveness of incentives to be superficial, short-lived and one-dimensional—thus, failing to address underlying structural barriers to care and structural determinants of health. They also raised concerns about the unintended consequences of incentives and the strains they may put on the therapeutic relationship. They had developed strategies to mitigate the ensuing ethical and professional tensions and to make their work feel relational rather than transactional. Conclusions We identify an urgent need to problematize the use of incentives as a part of the "HIV Cascade" agenda and interrogate the ethics of engaging in this practice from the perspective of health care and service providers. More broadly, we question the introduction of market logic into the realm of health care—an area of life previously not subject to monetary exchanges. (shrink)

The concept of social justice is making a revival in nursing scholarship, in part in response to widening health inequalities and inequities in high‐income countries. In particular, critical nurse scholars have sought to develop participatory research methods using peer researchers to represent the ‘voice’ of people who are living in marginalized spaces in society. The aim of this paper is to report on the experiences of nurse and peer researchers as part of a project to explore the experiences of people (...) who find themselves destitute following the asylum process in the UK. In seeking to explore social injustice, three challenges are identified: lack of a robust political theory, institutional/professional constraints and an absence of skills to engage with the politics of social (in)justice. Each challenge is presented, opposing voices outlined and some possible solutions are suggested. The work of political theorist Nancy Fraser is used as a conceptual framework, in particular her focus on mis/framing and political representation for social justice. In addition, it is suggested that social justice needs to be further embedded in nursing policy and curriculum. Finally, nurses are encouraged to develop practical political skills to engage with both politics and the media in a neoliberal globalizing world. (shrink)

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...) been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

Illicit drug users are frequently identified as a ‘vulnerable population’ requiring ‘special protection’ and ‘additional safeguards’ in research. However, without specific guidance on how to enact these special protections and safeguards, research ethics committee (REC) members sometimes fall back on untested assumptions about the ethics of illicit drug use research. In light of growing calls for ‘evidence-based research ethics’, this commentary examines three common assumptions amongst REC members about what constitutes ethical research with drug users, and whether such assumptions are (...) borne out by a growing body of empirical data. The assumptions that form the focus of this commentary are as follows: (i) drug users do not have the capacity to provide informed consent to research; (ii) it is ethically problematic to provide financial incentives to drug users to participate in research; and (iii) asking drug users about their experiences ‘re-traumatizes’ and ‘re-victimizes’ them. (shrink)

Scientific advances in health care have been disproportionately distributed across social strata. Disease burden is also disproportionately distributed, with marginalized groups having the highest risk of poor health outcomes. Social determinants are thought to influence health care delivery and the management of chronic diseases among marginalized groups, but the current conceptualization of social determinants lacks a critical focus on the experiences of people within their environment. The purpose of this article was to integrate the literature on marginalization and situate the (...) concept in the framework of social determinants of health. We demonstrate that social position links marginalization and social determinants of health. This perspective provides a critical lens to assess the societal power dynamics that influence the construction of the socio‐environmental factors affecting health. Linking marginalization with social determinants of health can improve our understanding of the inequities in health care delivery and the disparities in chronic disease burden among vulnerable groups. (shrink)