Exploring Ethical Challenges in African Genomic Research Through Drama

Moderator: Mr Marlyn Faure
Presenter: Assoc. Prof Kirsty Donald
Presenter: Ms Lebogang Montewa
Presenter: Professor Ambroise Wonkam
Presenter: Prof Jantinade Vries

Assoc. Prof Kirsty Donald

Associate Professor Kirsty Donald is a Paediatric Neurologist with an interest in developmental disabilities as they manifest in resource limited settings such as South Africa. She heads a clinical service which sees approximately 4000 children with developmental problems and neurodisability every year and is deputy director of the newly established UCT Neuroscience Institute. Her specific research interests include investigating the effects of maternal mental health on the development of their infants, as well as preventable causes of pediatricneurodisability such as prenatal alcohol and methamphetamine exposure, organophosphate poisoning, and the neurological and neurocognitive complications of HIV. She is involved in several research projects that aim to identify and understand neurodevelopmental disabilities amongst children living in LMICs. These projects include the multi-modal imaging of children exposed to risk factors prevalent in LMICs, and a multisite investigation of the genetics of developmental disabilities amongst African populations. Her work on the early identification of developmental disabilities in children in low-income settings aims to facilitate early and sustained interventions that are scalable in the LMIC context.

Mr Marlyn Faure

Marlyn Faure is currently heading up the community engagement projected at the IFGENRA centre. The community engagement project uses drama as a method to explore ethical questions related to genomic research. Marlyn has recently completed his MSc (Med) degree which focussed on the relationship between genetic attribution of disease and stigma in African populations.

Marlyn has an inter-disciplinary background including sociology, media, religious studies and health. He has worked in various research and NGO contexts including the Human Sciences Research Council, the University of Stellenbosch, and the Institute for Justice and Reconciliation.

His research is increasingly focussed on the relationship between science and technology, and socio-political contexts with an emphasis on how these spheres increasingly co-construct each other 21st century contexts.

Ms Lebogang Montewa

Lebogang Montewa is the IFGENERA Project Coordinator. She previously served as a program manager in the NGO sector focusing on Paediatric HIV and Women’s Health. Her portfolio involved the management of a cost effective and holistic approach to paediatric service uptake using clinic-community collaboration models in the East West and Central Africa regions. Lebogang also served as a national coordinator for the South African National Aids Council Women Sector (SANACWS) responsible for the coordination and administration of the Women’s Sector annual operational plans implementation including sector meetings, advocacy campaigns, capacity building plans, building the profile and overseeing the marketing of the organisation. Lebogang obtained an MPH degree in 2012 exploring “Comparative analysis of diagnostic and procedure coding systems for use in public hospitals.

She gained experience in research coordination with the South African Medical research council and is highly skilled at networking, relationship building and coaching and workshop facilitation.

Prof Jantinade Vries

Jantina de Vries is an Associate Professor in Bioethics at the Department of Medicine of the University of Cape Town and Founding Chair of the H3Africa Working Group on Ethics. She is the co-Director of the IFGENERA H3Africa ELSI collaborative Centre. Her work focuses on developing ethical best practice for genomics research in Africa. Amongst others, her work has contributed to developing an evidence base for best practice in informed consent for African genomics research, investigating ethical challenges relating to the sharing of African samples and data, exploring what constitutes fairness in African genomics research collaborations, and studying how genomic research may impact on stigma relating to disease. She combines qualitative and quantitative sociological research with normative and theoretical analysis. Whilst actively contributing to academic literature that explores ethical challenges in African genomics research, a second and equally important output relates to the translation of her work into forward-looking policies and best practice guidelines that are used in the regulation of genomics research on the African continent.

Jantina obtained her DPhil through The Ethox Centre at the University of Oxford (2011), and MSc degrees in sociology at Wageningen University (2003) and the European University Institute (2004). She was a Postdoctoral Fellow at the Human Genetics Department at UCT (2011-2013). She was previously the ethics coordinator for MalariaGEN. She is a member of the H3Africa Steering Committee, of the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health, and of the WWARN Data Access Committee. She is also a Board member of the Public Population Project in Genomics and Society (P3G).

The wide sharing of individual health-related data for research and translation purposes is said to accelerate discovery of new knowledge and its translation into clinical applications. In genomics, the sharing of individual genomic data increases the power and value of genomic analyses yet it raises concern over confidentiality and consent. In the public health context, the sharing of individual data – for instance, relating to emerging malaria parasite drug resistance – raises concerns over potential stigmatization. In both examples, sharing needs to be done in a way that builds African research capacity and that offers some benefit to the individuals and communities that participated in the research. In this panel, we will explore practical, legal and ethical challenges and opportunities for data sharing.