The GLaD program is housed at the Australian Research Centre in Sex, Health and Society, one of Australia’s most important research hubs for work on sexuality, gender, health, and human relationships. This includes many core GLaD research interests, such as the role of law and legal processes in shaping gender and sexuality, and the relationship between human rights, sexuality, and gender, for example.
Recently, GLaD team members were invited to showcase current project findings at the Centre’s regular seminar series. Team members Dr Sean Mulcahy, Emily Lenton and Dr Dion Kagan presented material from current projects, in turn exploring LGBTIQA+ human rights, hepatitis C data justice, and experience of life after treatment for hepatitis C.
First up, Sean Mulcahy offered preliminary findings from a new La Trobe University-funded project called ‘Mapping Australian legislation on LGBTIQA+ rights’. Posing the question of whether Australian human rights charters are effective at protecting, respecting, and fulfilling LGBTIQA+ rights, Sean’s project examines how Australian parliamentary human rights frameworks conceptualise human rights, how LGBTIQA+ rights fit into these regimes, and how LGBTIQA+ activists can effectively pursue rights claims through these avenues. The project assesses whether Australian human rights frameworks serve LGBTIQA+ people’s needs.
As an initial snapshot of this inquiry, Sean gave a talked called ‘Who’s right on whose rights’, which considered these questions by shining a spotlight on recent legislation passed in Queensland that prohibits conversion practices. The Queensland case study shows that human rights issues are mobilised differently and in sometime contrasting ways by LGBTIQA+ groups, women’s groups, religious groups, and others, but that LGBTIQA+ advocates rarely use parliamentary scrutiny processes in advancing rights claims. Nevertheless, these processes can raise human rights issues that LGBTIQA+ advocates may want to challenge and, if these views go unchallenged, they can percolate into the debate in the parliamentary chamber and the surrounding media in a way that may impact legislative outcomes.
Next, we heard a paper from Emily Lenton drawing from GLaD’s major project on post-cure lives project, which invetigates hepatitis C-related stigma in the era of curative treatment. With the ambitious goal to eliminate hepatitis C in Australia by 2030 still ahead of us, Emily’s paper considered emerging public health strategies that use health data to find, diagnose and treat the ‘missing millions’ of people with the virus. Many of those diagnosed have been ‘lost to follow-up’, and it has been suggested that the next phase of elimination in Australia requires new approaches to find and treat these people, including ‘case-finding’ and following up departmental notification data through ‘contact tracing’. These novel strategies may help us reach the goal of eliminating hepatitis C by getting more treatment to more people; however, they also raise ethical questions about consent, disclosure, and the (mis)use of private health information, which in turn raises the risk of exposing people to the stigma and discrimination associated with hepatitis C.
Emily’s paper, entitled ‘Hepatitis C data justice: The implications of data-driven approaches to the elimination of hepatitis C’, considered this rapidly transforming digital health information landscape and outlined a response to it in the form of ‘hepatitis C data justice’. As she explained, data justice is
increasingly used to conceptualise and advocate for the interests of people who are especially vulnerable to the possible harms brought about by changing uses of data in policy and practice. The term foregrounds the importance of justice as inherent to data, and the ways that data can be used (inadvertently or by design) to perpetuate injustice, and that justice for some groups requires more than the standardised data protections, regulations, and privacy laws that apply to everyone, without differentiation.
Stressing the importance of justice considerations in any new public health approaches involving the use of personal health data of people who inject drugs and people with hepatitis C, Emily’s paper also argued that policymakers need to understand that personal data are
always inherently social and political, and that technocratic fantasies that data can be evacuated of their social worlds can never be realised.
The final speaker was GLaD member Dion Kagan, also presenting new material from the post-cure lives project addressing how people who have undergone treatment with new-generation treatments are experiencing life after cure. Given the huge efforts to treat as many people with the virus as possible, Dion’s paper considered whether a ‘cure’ for hepatitis C means what we think it means. While biomedical cure promises to put an end to the virus, interviews we conducted with people in Victoria, New South Wales and Queensland suggest that treatment does not produce an end to the (social) effects of the disease, including the stigma and discrimination associated with it. Sharing examples from these interviews, Dion considered the complex, alternative and ‘untidy’ ways that cure is often experienced. To better account for these experiences, he argued that we need to re-frame our understanding of biomedical cure as something that puts a definitive end to hepatitis C and ‘restores’ people to a former state of wholeness. As we are now living in the era of elimination, and the global cohort of people living post-cure lives continues to grow, recognising and addressing the limits of cure is increasingly urgent.
Keep an eye on the GLaD website and Twitter for articles and other outputs from these two projects, and you can watch a video recording of all three papers here.