ARCSHS Summer Research Showcase

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ARCSHS Summer research showcase

A three-part showcase of research currently underway at ARCSHS:

‘I’m not hep C free’: The persistence of hepatitis C after cure

Dr Dion Kagan

Since the advent of more effective, new-generation treatment for hepatitis C, immense resources have been devoted to delivering cure to as many people with the virus as possible. The scale-up of treatment aims to prevent liver disease, liver cancer and onward transmission of hepatitis C in the population, but social research shows that people also approach treatment with its social promises in mind, including a reduction or even eradication of stigma from their lives. Such hopes reflect broader ideas about medical cure, which is seen to put an end to illness. But what does cure mean among people for whom treatment does not produce an end to the (social) effects of (a heavily stigmatised) disease? While new treatments promise to eliminate hepatitis C, restoring people to wholeness and normality, accounts of post-cure life indicate that hepatitis C can linger in various ways. This paper draws on interviews with people who have undergone new treatments and recent conceptual re-framings of cure from medical anthropology and disability studies to explore expanded meanings of cure. It suggests that the dominant biomedical understanding of cure can foreclose insight into the social and other effects of illness that linger after treatment. Rather, thinking at or beyond the limits of cure can help to better understand and address the persistence of illness after cure. In the case of hepatitis C in the elimination era, this is increasingly important as the cohort of people living post-cure lives continues to grow.

Hepatitis C data justice: The implications of data-driven approaches to the elimination of hepatitis C

Emily Lenton

Achieving hepatitis C elimination by 2030 is inspiring novel methods to find, diagnose and treat the ‘missing millions’ of people with hepatitis C. Globally, rates of hepatitis C treatment uptake have declined. Public health approaches that use data-driven approaches including case finding, departmental notification and contact tracing are increasingly being developed and implemented to reach the elimination goal. Drawing from thirty interviews with policymakers, lawyers, peers and others who work with people affected by hepatitis C, we explore how they perceive the use of data-driven interventions to achieve elimination. While there was some enthusiasm for data-driven interventions, several concerns were raised. Stakeholders were suspicious of the development of data collection processes and systems, or they believed that people with hepatitis C were. Some expressed concerns about the sharing of people’s health data without active consent. Concerns that data-driven approaches could perpetuate hepatitis C-related stigma and discrimination were also raised. We explore these concerns through the analytic lens of hepatitis C ‘data justice’. This approach helps us account for complexities, risks and challenges, and critique what is at stake for those affected. In concluding, we argue that data-driven interventions must foreground social justice concerns and the strengths and limitations of the most usual models of data, consent and risk.

Who’s right on whose rights: Preliminary findings from mapping legislation on LGBTIQA+ rights

Dr Sean Mulcahy

LGBTIQA+ advocates have predominantly focused on human rights in the context of international human rights law in global fora. However, this century has seen the introduction of domestic human rights charters in Australia, which require that proposed laws be subject to human rights scrutiny by parliamentary committees. At the same time, the United Nations Independent Expert on Protection Against Violence and Discrimination Based on Sexual Orientation and Gender Identity has called on states to undertake ‘an exercise of law review and reform to ensure conformity with international human rights law’ and some state and territory governments have made commitments to look at relevant laws to ensure they address LGBTIQA+ people’s human rights. These calls and commitments, while welcome, assume that human rights provide an effective framework to guide reform that will enable fairer and more responsive approaches to LGBTIQA+ people’s needs. This has happened to some degree in international jurisdictions, where human rights charters have been leveraged in court cases, but Australian human rights charters are more limited in scope. This raises the question: are Australian human rights charters effective at protecting, respecting, and fulfilling LGBTIQA+ rights? Through a case study of Queensland legislation prohibiting conversion practices, this paper will explore the production and effects of LGBTIQA+ rights claims under Australian parliamentary human rights scrutiny regimes. Through studying the ways in which parliamentary human rights frameworks conceptualise human rights, this paper and the broader project from which it stems will provide insight into how LGBTIQA+ rights fit within these human rights regimes; the strengths and weaknesses of existing approaches to LGBTIQA+ rights claims; and how LGBTIQA+ rights claims can be bolstered for improved health and social outcomes.

Access

This event will be live captioned using Otter.ai. It will also be recorded, and later published with full captions. A live Auslan interpreter is available on request; please let us know as soon as possible to allow for interpreter bookings.