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BackgroundInvolvement of adolescent girls in biomedical HIV research is essential to better understand efficacy and safety of new prevention interventions in this key population at high risk of HIV infection. However, there are many ethical issues to consider prior to engaging them in pivotal biomedical research. In Uganda, 16–17-year-old adolescents can access sexual and reproductive health services including for HIV or other sexually transmitted infections, contraception, and antenatal care without parental consent. In contrast, participation in HIV prevention research involving investigational (...) new drugs requires adolescents to have parental or guardian consent. Thus, privacy and confidentiality concerns may deter adolescent participation. We describe community perspectives on ethical considerations for involving adolescent girls in the MTN 034 study in Uganda.MethodsFrom August 2017 to March 2018, we held five stakeholder engagement meetings in preparation for the MTN 034 study in Kampala, Uganda (NCT03593655): two with 140 community representatives, two with 125 adolescents, and one with 50 adolescents and parents. Discussions were moderated by the study team. Proceedings were documented by notetakers. Summary notes described community perspectives of adolescent participation in HIV research including convergent, divergent or minority views, challenges, and proposed solutions.ResultsMost community members perceived parental or guardian consent as a principal barrier to study participation due to concerns about adolescent disclosure of pre-marital sex, which is a cultural taboo. Of 125 adolescent participants, 119 (95%) feared inadvertent disclosure of sexual activity to their parents. Community stakeholders identified the following critical considerations for ethical involvement of adolescents in HIV biomedical research: (1) involving key stakeholders in recruitment, (2) ensuring confidentiality of sensitive information about adolescent sexual activity, (3) informing adolescents about information to be disclosed to parents or guardians, (4) offering youth friendly services by appropriately trained staff, and (5) partnering with community youth organizations to maximize recruitment and retention.ConclusionsStakeholder engagement with diverse community representatives prior to conducting adolescent HIV prevention research is critical to collectively shaping the research agenda, successfully recruiting and retaining adolescents in HIV clinical trials and identifying practical strategies to ensure high ethical standards during trial implementation. (shrink)

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Generally, regulation is thought of as a constant that carries with it both a formative and conservative power, a power that standardises, demarcates and forms an order, through procedures, rules and precedents. It is dominantly thought that the singularity and formalisation of structures like rules is what enables regulation to achieve its aim of identifying, apprehending, sanctioning and forestalling/pre-empting threats and crime or harm. From this point of view, regulation serves to firmly establish fixed and stable categories of what norms, (...) customs, morals and behaviours are applicable to a particular territory, society or community in a given time. These fixed categories are then transmitted onto individuals by convention, ritual and enforcement through imperatives of law (and technology) that mark certain behaviours as permissible and others as forbidden, off bounds. In this manner, regulation serves a programming (i.e., a calculable or determinable) purpose. It functions as a pro-active management or as a mastery of threats, risks, crimes and harms that affect a society and its security both in the future and in the present. Regulation for instance, will inscribe and codify what it determines to constitute crime or harm such as pornography, incitement of terrorism, extremist speech, racial hatred etc. These determined or calculated/calculable categories will then be enforced and regulated (e.g. through automated filtering) in order to ensure a preservation of public order within society. Drawing mainly from deconstruction, this article situates law and technologies within a wider ecological process of texts, speech and writing i.e., communication. In placing regulation within disseminatory and iterable processes of communication, this article complicates, destabilises and critiques the dominant position of determinability and calculability within the regulatory operations of law. (shrink)

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This paper develops the notion of being right-with, a conceptual lens that underscores what happens when individuals turn to human rights law and other legal processes and proceedings to address injustices by the state. It does this through a critical multi-directional reading of two Uganda High Court appeal cases that overturned the decision of a lower court which at first instance had convicted Dr Stella Nyanzi of the offences of cyber harassment and offensive communications. Being right-with is a regulative and (...) coercive idea within human rights law that animates a violent irrepressible police drive. I use being right-with to assert that when individuals make rights claims under human rights law (however radical those assertions might be), they are still imbricated within a mode of liberal humanist subjecthood that is always conceptually unfree. In trying to move away from this conceptual and dialectical trap of being made right-with and unfree under liberal humanism, this paper tentatively considers Black feminist theorisations of care and freedom ‘to-come’, as well as Édouard Glissant’s notion of opacity to explore the concept of being with elsewhere as a way of articulating practices of Black life that make freedom elsewhere possible. (shrink)

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Analysing time-dependent independent variables requires the use of process-oriented statistical models. Yet social scientists have often had to use data collected at a single point in time, making their task difficult. Making several assumptions about the covariates, the present study uses survival analysis and other statistical techniques to analyse the 1996 South African population census data and examine the effects of selected independent variables on the timing of parenthood in the country. It was found that the onset of parenthood occurs (...) late in South Africa compared with the pattern in most other African societies. While education plays a role in the postponement of parenthood within racial groups, it fails to explain the differences between African and Coloured women on the one hand, and White and Asian women on the other hand, a finding that suggests the existence of two regimes of family formation in South African society. (shrink)

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