Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Nothando Ngwenya is a 2018 GHBN Bursary Fellow
I'm currently working at the Africa Health Research Institute based in Mtubatuba KwaZulu Natal. My main research interests are around chronic care in adolescence and broadly the ethics of research in developing countries, in particular the understanding of consent by participants. Health literacy is important in health research as much as it is in disease prevention and treatment compliance. I am also developing skills in participatory research methods which involve visual digital technology as this combines my background in computer science and my passion in health.
Project Title: The ethics of post-trial access (PTA) in international research and potential for moral hazard: arguments for different responsibilities
Legislation and guidelines on Post-trial Access (PTA) are inconsistent and not as forward moving as the rate at which interventional research is developing in Low and middle-income countries (LMIC). There is increasing interest in the responsibilities and obligations of different stakeholders to research participants when a trial ends. We want to explore the issues around PTA in trials/research in developing countries. We are interested in the ethical aspect and practicalities of implementing Helsinki guidelines when a trial ends and will use the recently concluded HIV Treatment as Prevention trial as a case study. The trial examined the hypothesis that home-based HIV testing of all individuals in the community followed by immediate antiretroviral therapy (ART) initiation regardless of CD4 count would result in reduced HIV incidence in that community. During the trial, HIV-positive individuals who were not eligible for ART according to South African guidelines were offered ART in the trial. Furthermore, at the time of initiation of the trial, there was still equipoise about whether starting ART at high CD4 count (>350 cells/mm3) was beneficial to the individual.
TASP participants including their families will take part in a photovoice participatory exercise to develop a digital story sharing their experience of transitioning to the standard health care system and experience of continued access to treatment. The digital story will be used to facilitate a discussion with the community advisory board (CAB) that approved the trial to get their perceptions on responsibilities in PTA to develop questions to be posed to the scientific leaders (investigators) of the trial, sponsors of the trial and Department of Health in South Africa representatives at district and provincial levels.
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