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Accepted Paper:

Open secrets as a moral obligation: HIV prevention and the politics of data disaggregation in Dublin, Ireland  
Margaretta Mitchell (McGill University)

Paper Short Abstract:

I explore how Irish HIV activists strategically deployed public health data to create and sustain demand for preventative medication. I argue that this politics of data concealment reveals the fragility of allyship across axes of queerness, race, class, and citizenship in contemporary Ireland.

Paper Abstract:

From 2015 until 2019, the rising number of HIV diagnoses was the unifying issue for HIV activists in Ireland. Deploying public health data in tandem with crisis rhetoric, activists used publicly available health data to successfully lobby the government for subsidized preventative medication, known as PrEP (pre-exposure prophylaxis). However, the data activists cited aggregated both novel diagnoses of HIV and cases where the person was previously diagnosed outside of Ireland but new to care within the Irish system. While novel cases actually decreased slightly between 2015 and 2019, previously diagnosed cases increased dramatically during the same period. Activists strategically concealed these divergent trends and focused on the overall increase in order to sustain media and popular attention on their work. Drawing on work in critical public health on the use of statistics in evidence-based health policy (Adams, in Bihel and Petryna 2013), neoliberal policy in public health (Schecker and Bambra 2015), as well as multimodal field research conducted between 2019 and 2023, I explore how activists justified their choice to leave data ambiguous in terms of both moral obligation and strategic value. While activists succeeded in their strategic efforts to increase access to HIV prevention, I argue that the moral obligation reveals both a conceptual investment in solidarity and a simultaneous undoing of allyship across axes of queerness, race, class, and citizenship in contemporary Ireland.

Panel P202
Number politics: ethnographies of composing, sensing, and being with data
  Session 2 Wednesday 24 July, 2024, -