Who is Transmitting HIV in Our Community?: Ethical, Legal and Social Implications of HIV Network Research

Prof Douglas Wassenaar
Dr Zaynab Essack
Mr Farirai Mutenherwa
Prof Ann Strode
Prof Tulio de Oliveira

Dr Zaynab Essack

Zaynab Essack, PhD, is a research psychologist and senior research specialist at the Human and Social Development Programme at the Human Sciences Research Council. She obtained a PhD in Psychology from the University of KwaZulu-Natal (2015) on the topic: An empirical study of standards of prevention in South African HIV vaccine trials: Norms, perspectives and practices.

Zaynab’s current research interests include the sexual and reproductive well-being of adolescents and young women, and developing and evaluating interventions to address current social issues in high-poverty and high HIV-prevalence communities. She is also interested in issues of race, inequality and identity. Zaynab has presented at national and international conferences and has co-authored several peer-reviewed journal articles. She is a member of the HSRC Research Ethics Committee and convenes a module on Informed Consent for the South African Research Ethics Training Initiative (SARETI, UKZN).

Mr Farirai Mutenherwa

Farirai Mutenherwa is a PhD student in the School of Applied Human Sciences, University of KwaZulu-Natal. His PhD focuses on the ethical, legal and social implications of HIV molecular epidemiology. He received his postgraduate training in research ethics through the South African Research Ethics Training Initiative (SARETI).

Prof Doug Wassenaar

Professor Doug Wassenaar is a clinical psychologist and professor at the School of Applied Human Sciences, University of KwaZulu-Natal, South Africa. He is the director of SARETI – South African Research Ethics Training Initiative, a US National Institutes of Health/Fogarty-funded programme offering Masters-degree training in research ethics at the University of KwaZulu-Natal, South Africa (2004-present). ea hasd graduated over 65 Masters students to date, and 5 PhD student. He chaired the UKZN Biomedical Research Ethics Committee 2008-2015 and has chaired the Human Sciences Research Council’s Research Ethics Committee since 2006. He is a member of the WHO/UNAIDS Vaccines Advisory Committee. From 2003-2012 he chaired the WHO-UNAIDS African AIDS Vaccine Programme’s (AAVP) Ethics Law and Human Rights Group.  He is a consultant to the HIV AIDS Vaccines Ethics Group (HAVEG) and a research ethics consultant to several African research and ethics programmes. He has conducted ethics reviews for the European Union and served on the Biomedical Ethics and International Public Engagement Committees of the Wellcome Trust. He has conducted research ethics training workshops in over 20 countries and facilitated a retreat for the Ethics Review Committee of the World Health Organisation. He has authored or co-authored over 70 peer-reviewed journal articles, of which over 50 are on research ethics, 20 chapters in books and has been/is the PI or Co-PI on several research and training grants from funders such as the Fogarty International Center of the US National Institutes of Health, UNAIDS, EDCTP and the Wellcome Trust.

Prof Tulio de Oliveira

Prof. Tulio de Oliveira is a bioinformatician with more than 20 years experience in HIV research. He received his PhD from the Nelson R Mandela School of Medicine, UKZN, South Africa. He was a Marie Curie research fellow at the University of Oxford, U.K. from 2004 to 2006, where he received in depth training on virus genetic analysis and molecular evolution. He is recognized as an expert in HIV genetic data and bioinformatics and has published high-impact research articles including the one on the Rega Subtyping tools (de Oliveira et al. Bioinformatics 2005), one that demonstrated the innocence of six foreign medical personnel condemned to death for infecting 438 children in a hospital in Libya with HIV (de Oliveira et al. Nature 2006), open access and public HIV drug resistance databases in Africa (de Oliveira et al. Nature 2010) and the first case of proven HIV surrogate transmission in South Africa (Goedhals et al. Lancet 2012).

Although significant strides have been made towards the prevention of HIV transmission, HIV incidence is still notably high in Sub-Saharan Africa. A clear understanding of the transmission dynamics is critical to guide the design of more effective interventions, particularly in generalized epidemics. One approach towards achieving this goal is to conduct phylogenetic analysis of viral data to identify the most likely transmitters of the virus and to whom it is most likely to be transmitted. By comparing HIV genetic data from different infected individuals, patterns of transmission are identified through inferences made on historical relationships.

Despite the increasing use of phylogenetic analysis to understand HIV transmission, very few people outside the discipline are aware of the technique, which has yet to attract debate and public scrutiny on the advantages, disadvantages, risks (real or perceived) and benefits it offers. This deliberative session will provide a unique opportunity for delegates to learn more about HIV phylogenetics research and to consider the ethical, legal and social implications of the design, conduct and use of results from such studies. Blind spots on the research process will be identified and examined and any misconceptions will be corrected.