Missing voices: why youth perspectives are essential for Ubuntu bioethics in the context of HIV testing

This article responds to Mwinsa and colleagues’ work where they explore differences between Ubuntu -based bioethics and international bioethical principles through the lens of Zambia’s HIV testing policy. While Mwinsa and colleagues offer valuable insights into Ubuntu bioethics as a considerable alternative to Western informed consent requirements for HIV testing, we argue that their suggestion on ‘moderate communitarianism’ and Ubuntu application could be profoundly enriched by meaningfully including youth perspectives in the bioethical deliberations. In sub-Saharan Africa, young people are disproportionately affected by the HIV epidemic and are more often the recipients of HIV testing services. These services are available as a result of HIV policies, such as the one in Zambia. Yet, their voices remain largely absent from policy and bioethics discussions, which largely centre around adult perspectives. To fully realise Ubuntu ’s foundational principle of ‘I am, because we are’, and the goal of collective good, we maintain that it is important to raise critical questions as to who constitutes the ‘community’ in ethical decision-making, to ensure that young people are not left behind. In their design, we argue that analysis of the Ubuntu framework would benefit from incorporating the perspectives of adolescents and young people—those most directly affected by HIV testing policies. Thus, our position canvasses for the realisation of Ubuntu ’s vision of collective wisdom through comprehensive community participation, and to align with growing evidence supporting youth-centred and youth-friendly approaches to HIV decision-making.