Inequality and ethics in paediatric HIV remission research : from Mississippi to South Africa and back

Abstract

In 2013, physician-researchers announced that a baby in Mississippi had been ‘functionally cured’ of HIV [Persaud, D., Gay, H., Ziemniak, C. F., Chen, Y. H., Piatak, M., Chun, T.-W., … Luzuriaga, K. (2013b, March). Functional HIV cure after very early ART of an infected infant. Paper presented at the 20th conference on retroviruses and opportunistic infections, Atlanta, GA]. Though the child later developed a detectable viral load, the case remains unprecedented, and trials to build on the findings are planned [National Institute of Allergy and Infectious Diseases. (2014). ‘Mississippi baby’ now has detectable HIV, researchers find. Retrieved from http://www.niaid.nih.gov/news/newsreleases/2014/pages/mississippibabyhiv.aspx]. Whether addressing HIV ‘cure’ or ‘remission’, scrutiny of this case has focused largely on scientific questions, with only introductory attention to ethics. The social inequalities and gaps in care that made the discovery possible – and their ethical implications for paediatric HIV remission – have gone largely unexamined. This paper describes structural inequalities surrounding the ‘Mississippi baby’ case and a parallel case in South Africa, where proof-of-concept studies are in the early stages. We argue that an ethical programme of research into infant HIV remission ought to be ‘structurally competent’, and recommend that paediatric remission studies consider including a research component focused on social protection and barriers to care.