Centre for Medical Ethics & Law
Stakeholder Engagement Team
Through its diverse composition of bioethicists, social scientists and clinical researchers, the REDSSA stakeholder engagement (REDSSA SE) group's purpose is to address the knowledge needs of various stakeholders impacted by data science health research. Stakeholders include the communities who knowingly or unwittingly share their health-related data through health-seeking behaviour, through the use of social media and electronic tracking devices such as mobile phones and wearables. Other stakeholders include research ethics committee (REC) members, clinical and social science researchers that use big data for health research, and data scientists. The REDSSA SE group aims to develop community education tools for those who contribute their health data to large databases for data science health and research purposes. The knowledge requirements of other professional stakeholders will be addressed through workshops, seminars, webinars, journal publications and information available on the REDSSA page. This group will also explore participatory approaches to community/stakeholder engagement to raise awareness of the ethical and social issues related to data science health research to ensure that educational and other tools developed are acceptable by the intended end users.
Gonasagrie (Lulu) Nair
Lulu Nair is a senior lecturer and clinician with a background in public health, clinical trial research in HIV and TB treatment and prevention and bioethics. Dr Nair has a noteworthy publication record and has served on the UKZN Biomedical Research Ethics Committee (BREC) and the REC of the South African MRC and is currently on the HREC of the Faculty of Medicine and Health Sciences at Stellenbosch University. She is currently a member of the Tygerberg Hospital Clinical Ethics Committee. She has served on the executive committees of CAPRISA (Centre for AIDS Programme of Research in South Africa) and the NNIH-funded Microbicides Trial Network (MTN) in addition to being a member of the strategic planning group of the Desmond Tutu Health Foundation and more recently on the Management Committee of the Centre for Medical Ethics and Law (CMEL). In addition to having been the site principal investigator on HIV and TB prevention clinical trials, she has been the protocol chair of 2 NNIH-funded studies focused on HIV prevention. She has an interest in HIV and STI prevention strategies for adolescent girls and young women and community engagement and the informed consent process for research participation. Lulu serves as an ethics co-investigator for the REDSSA project.
Sharon Kling is an emeritus associate professor in the Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences (FMHS), Stellenbosch University. She is a past president of the College of Paediatricians of South Africa and is currently a member of the Executive Committee of the Allergy Society of South Africa (ALLSA). She is a member of both the Clinical Ethics Committee at Tygerberg Hospital and the Undergraduate Research Ethics Committee of the FMHS. She holds an MPhil in Applied Ethics and is currently completing her doctorate, which critically examines the work of clinical ethics committees in South Africa. She serves as a co-investigator for the REDSSA project.
Adetayo Emmanuel Obasa
Adetayo Emmanuel Obasa is a medical virologist, lecturer at CMEL and HREC member at Stellenbosch University. He completed a postgraduate diploma in Applied Ethics and is currently completing a Master of Philosophy in Applied Ethics (Bioethics). He serves as a researcher for thethe REDSSA project.
Dr. Suzanne Day is a Research Assistant Professor in the Department of Medicine – Division of Infectious Diseases, at the University of North Carolina at Chapel Hill. Dr. Day is a sociologist with a special interest in community-engagement and participatory approaches to health research. She earned her PhD in 2015 at York University, and in 2021 she completed a postdoctoral fellowship at UNC Chapel Hill, where her work focused on social science research to advance stakeholder- driven approaches to social and ethical issues in research on HIV and other infectious diseases. Her ongoing work in the Division of Infectious Diseases includes crowdsourcing stakeholder input on HIV research and other infectious diseases, identifying challenges with and solutions to adolescent inclusion in HIV research and exploring barriers and facilitators to participation in vaccine trials.
Stuart Rennie is an Associate Professor in Social Medicine at the University of North Carolina (UNC) at Chapel Hill (USA), Core Faculty at the UNC Bioethics Center and Extraordinary Professor in Medicine at Stellenbosch University. He obtained his Masters in Anthropology and PhD in philosophy from Leuven University (Belgium). A member of the HIV Prevention Trials Network (HPTN) Ethics Working Group, he is currently an investigator in projects on the ethics of HIV research with pregnant adolescents, decision-making in HIV cure trials, and the use of HIV DNA for public health surveillance. Professor Rennie’s current teaching and research interests focus on research ethics, public health ethics and medical ethics in developing countries, primarily in sub-Saharan Africa. Professor Rennie serves as co-Principal Investigator for the REDSSA project.
Walter Jaoko is a Professor of Medical Microbiology and Tropical Medicine, the Director of KAVI-Institute of Clinical Research at University of Nairobi, and Fellow of the Africa Academy of Sciences. He has over 30 years’ experience in teaching, research and post-graduate student supervision in infectious diseases transmission, pathology, treatment, prevention and control, and has published over 200 articles in peer-reviewed scientific journals. He is also a bioethicist as an alumnus of the Fogarty funded ARESA training programme at Stellenbosch University where he obtained a Postgraduate Diploma in Health Research Ethics, and a holder of a Master of Global Bioethics degree from Anahuac University
Dr Cheryl Baxter, PhD is Head of Scientific Support at the Centre for Epidemic Response and Innovation at Stellenbosch University, Research Associate at the Centre for the AIDS Programme of Research in South Africa (CAPRISA). Her primary research focus is HIV prevention, specifically strategies to reduce HIV acquisition among young women and issues related to sexual and reproductive health. She has extensive experience in implementing clinical trials evaluating HIV prevention interventions and is currently a co-investigator on the DSI Africa project that uses big data to elucidate the clinical and epidemiological interactions between COVID-19 and HIV.
Dr Karel Caals is a Research Fellow at the National University of Singapore Centre for Biomedical Ethics. Karel obtained a PhD in Health Geography, after qualitative field research on the training of healthcare professionals in Timor-Leste to establish the concept of the More-than-National Health System. His resaAs part of his interest in health systems, he researches the digitalisation of health, working on topics such as the ethics of artificial intelligence in healthcare and digital health surveillance. Additional interests include various topics in the field of research ethics and stakeholder engagement via social media. As Assistant Editor, he manages and promotes the Asian Bioethics Review, an academic journal established and hosted by
Centre for Biomedical Ethics, and published by Springer Nature.
A medical doctor and epidemiologist, Professor Wim Delva has a joint research appointment at the International Centre for Reproductive Health Belgium (ICRH) and the South African Centre for Epidemiological Modelling and Analysis (SACEMA) at Stellenbosch University in South Africa. He is interested in the application of the statistical, epidemiological and mathematical modelling techniques to describe and analyse the behavioural and biological processes underlying generalised HIV epidemics in sub-Saharan Africa. His current research centres around the role of age disparate relationships, concurrency and oscillating migration in the spread of HIV in Southern Africa, the potential impact of early HIV treatment and concurrency reduction on the prevalence and incidence of HIV.
Keymanthri Moodley is a Distinguished Professor in the Department of Medicine and Director of the Centre for Medical Ethics and Law (CMEL), Faculty of Health Sciences, Stellenbosch University. Keymanthri is a specialist family physician, bioethicist and has served as a Principal Investigator on numerous clinical trials. In 2017, she was appointed as Adjunct Professor in the Department of Social Medicine, University of North Carolina-Chapel Hill (UNC), USA. Additionally, Professor Moodley is a member of the Academy of Science in South Africa (ASSAf) and completed an Executive MBA in 2015. She is an NRF rated researcher and has served on the SAMRC Board, the NHREC and in international organisations: WHO, International AIDS Society (IAS), NIH DSMBs and the WHO SAGE Ebola Working Group. The CMEL was re-designated as a Collaborating Centre in Bioethics in 2019 by the WHO. Professor Moodley serves as Principal Investigator for the REDSSA project.
Neetha Shagan Morar
Neetha is a Senior Research Manager at the HIV and other Infectious Diseases Research Unit (HIDRU) of the South African Medical Research Council. She is a trained social worker with a master's in medical science. Her goal is to make a significant footprint towards the environment and well-being of the community through partnerships and collaborations. Her growth and development are attributed to her learning from the volunteers and community members through social science research and external stakeholder engagement within HIV prevention clinical trials. Neetha is working towards amplifying the voice of the users of biomedical interventions to advocate equal access to effective prevention interventions. She was a member of the SAMRC Ethics Committee from 2013 to 2018. She currently serves as a member of the Clinical Research Initiative for Global Health (CRIGH).
Nezerith Cengiz is a bioethics graduate conducting empirical research on the REDSSA project at the Centre for Medical Ethics and Law at Stellenbosch University. She completed her undergraduate studies in Public Health from Monash University; and an
Honours degree and Master of Science in Bioethics and Health Law at the Steve Biko Centre for Bioethics at the University of Witwatersrand. Her Masters’ thesis focused on carebots and virtue ethics. Nezerith has a background working as a research assistant in vascular surgery research and ophthalmology. Nezerith’s current research focuses on the perspectives of REC members and researchers on data governance in sub-Saharan Africa. Since 2022 she is an ad hoc member of the Tygerberg Clinical Ethics Committee.
practising attorney in health law and biotechnology to academia focusing on interdisciplinary research in the intersection between science, technology, law, and ethics. She holds the degrees of BProc, LLB, LLM (Intellectual Property Law) and a PhD (Biotechnology Law). Her research interests include the regulation and ethics involved in advanced medical products such as gene therapies, gene and stem cell research, the use of big (geospatial) data in the context of health emergencies and pandemics, Digital Health technologies - in particular with regard to implanted devices such as Brain-Computer Interfaces and their impact on fundamental rights, including online behavioural manipulation and how it shapes debates around digital ethics and its push towards digital constitutionalism. Marietjie published widely on these topics, both nationally and internationally, and serves as co-editor for the special edition on Digital Ethics for the Humanities and Social Sciences Communications Journal (Springer Nature). She is an elected member of ASSAf involved with the second consensus study on gene therapies in South Africa, and one of the invited experts and co-authors of the SA Country Reports on COVID-19 in which she addressed various legal issues with regard to pandemic management. In her free time, Marietjie collaborates with artists and scientists to create comics which she uses to teach and stimulate debate around biotechnology and digital ethics.
Crowdsourcing Steering Committee
The REDSSA Stakeholder Engagement Team has formed the Crowdsourcing Steering Committee which is composed of a diverse group of stakeholders with experience in crowdsourcing methodologies, data science research, and community engagement, including
e.g. bioethicists, sociologists, and clinicalnicical researchers. The role of the steering committee is to assist with developing the parameters of the open calls seeking creative ideas for enhancing community engagement in data science research. The committee's efforts include
finalising the call for idea submissions, setting participation rules, and determining the prize structure, as well as ensuring the open call is relevant to and understandable by diverse populations.
Crowdsourcing Steering Committee Members:
- Dr Suzanne Day
- Dr Gonasagrie Nair
- Dr Emmanuel Obasa
- Dr Karel Caals
- Prof Sharon Kling
- Prof Walter Jaoko
- Prof Stuart Rennie
- Henrietta Agboje