Considering the impact of communities on research practice – the case of HIV

To mark World AIDS Day on 1 December we are releasing Dr Bridget Haire’s recent Miles Little Lecture: Considering the impact of communities on research practice – the case of HIV.

Across the globe, activism by communities affected by HIV has shaped research, policy and treatment. From ACT-UP die-ins in the 80s, through to the treatment access actions in the 90s and major sex worker led protests in the 2000s, HIV activism has presented an informed and often photogenic face to global media. In Australia and elsewhere, behind the attention-grabbing activist antics sat great networks of community-based collectives that gradually morphed into sober and respectable NGOs that provided care for the sick, health promotion to the potentially at risk and advice to government.

In this presentation I will consider some of the key lessons that AIDS has taught us about the role of communities in emergent infectious disease epidemics, drawing on my experiences as an HIV community sector worker turned bioethics researcher. I will argue that HIV has demonstrated how the involvement of affected communities is critical to ethical responses to infectious disease threats and provide examples from my colleagues in Nigeria about how this has been leveraged in the response to Ebola. I’ll finish with some reflections on funding community collaboration in research and health programming.

Dr Bridget Haire is a senior research fellow at the Kirby Institute, University of NSW, where she conducts research in the areas of research ethics, public health and human rights, particularly with regard to HIV and other blood-borne infections and sexual health. At the time of the lecture Bridget was the President of the Australian Federation of AIDS Organisations (AFAO), the federation for the community-based response to HIV in Australia. Bridget has a strong commitment to community-based health responses and prior to academia was involved with HIV and sexual and reproductive rights for more than 20 years as an advocate, editor, journalist and policy analyst. She completed her masters and PhD at Sydney Health Ethics.

The Miles Little Annual Lecture is hosted by Sydney Health Ethics, University of Sydney. It honours our inaugural Director, Professor Miles Little, who founded the Centre for Values, Ethics and the Law in Medicine (VELiM) in 1996. The centre was renamed Sydney Health Ethics in 2017. The annual lecture celebrates Professor Little’s significant and continuing contribution to scholarship in this area.