Health data systems and LGBTQ+ communities in Australia

Dr Mark Davis,
Monash University (Australia)

In this paper, I introduce a new project exploring health data systems and queer community life in Australia. Healthcare is rapidly transforming due to developments in personal data capture and analysis technologies combined with state interests in increased service provision efficiency and commercial enthusiasm for data-driven products. These developments are commonly posed as opportunities, but challenges are also apparent, including, disclosure and protection of sensitive information, discriminatory use of data, commercial exploitation, informed consent, epistemic justice and personal ownership of data. Sexuality and gender diversity intersects in with these challenges in complex ways. For example, data health systems can be configured to erase sexuality and gender diversity, implying that underserved people become invisible in policy and research. Alternatively, data practices can reify identity and practice in ways that reduce autonomy and constrain the creative production of queer life. Moreover, LGBTQ+ people themselves craft data-enhanced lives that reflect their own desires and circumstances. Funded by the Australian Research Council, colleagues at Monash University, UNSW and the University of Queensland and I are using qualitative and collaborative methods to explore queer encounters with health data. In this paper, I explain our research approach and consider conditions of possibility for safer and inclusive datafied life.


Dr Mark Davis is Associate Professor in the School of Social Sciences at Monash University, Melbourne, Australia, where he is Director of Global Engagement. His research focusses on the immune self, pandemics, superbugs, data medicine and inequity to help build more inclusive and effective social public health. Mark’s books include: Sex, Technology and Public Health (Palgrave), Pandemics, Publics and Narrative (Oxford University Press), co-authored with Davina Lohm, and Selling Immunity: Self, Culture and Economy in Healthcare and Medicine (Routledge). With Sanny Mulubale (University of Zambia) and Silvia Camporesi (University of Vienna), Mark is editing Crisis, inequity and legacy: Narrative analyses of the COVID-19 pandemic, for Oxford University Press, New York.