Centre for Medical Ethics & Law
REDSSA Conceptual Team
The REDSSA Conceptual group aims to develop normative and conceptual research projects on the ethical, legal and social issues (ELSI) in data science in sub-Saharan Africa. By 'normative research', we refer to a critical investigation into what should (or should not) be done in the conduct of data science, including descriptions of different positions on specific topics (such as consent for the use of phylogenetic data) and nuanced discussions of the strengths and challenges of such positions. By 'conceptual research', we refer to a systematic historical, cultural and philosophical inquiry into the origins, meanings and implications of concepts used to understand the world, in this case, the world of data science. Our specific focus will be largely on concepts central to ethical discussions in data science, such as (data sharing) obligations, individual and group privacy, anonymization, and 'data justice'. The group starts from the assumption that ethical concepts are value-laden, that the implicit values are not necessarily universal, and therefore, attention will be given to local cultural significance embedded in concepts such as 'data.' We thereby aim to contribute to the creation of a conceptual ELSI framework for data science, as well as illuminating and informing empirical ELSI work conducted by the REDSSA project.
Some of our meetings
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 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.
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.
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.
Caesar Atuire is a philosopher and health ethicist from Ghana who is currently the Ethics Lead for the MSc in International Health and Tropical Medicine. He is also a senior lecturer at the Department of Philosophy and Classics at the University of Ghana and an affiliate Instructor at the University of Washington's Department of Bioethics and Humanities. Caesar's interests and research in bioethics are conceptual and empirical. He works around revisiting some of the underlying conceptual frameworks informing bioethics by drawing on philosophical ideas, African and non-African, that address inequity in the relationships that govern current approaches to global health with an eye to new ethical frontiers, decolonization, and pluriversality. He co-edited a volume titled Bioethics in Africa, which discusses bioethical problems from an African perspective. He is currently leading a team on a Wellcome Discovery Award to explore conceptualizations of solidarity and to design a solidarity index for ranking global health funders. He has designed a training package in clinical ethics for nursing trainees in Ghana based on real-life cases, served on IRBS, and contributed to the design and teaching of the first MSc in bioethics at the University of Ghana. He has led empirical research on conceptualizations and ethics of mental healthcare, especially in relation to persons who hold cultural and religious beliefs about the mind. Caesar is a member of the WHO's Covid-19 Ethics and Governance Working Group, a member of the Steering Committee of the Global Forum for Bioethics in Research, a Board Member of the International Association of Bioethics, and a core member of the Africa CDC-linked Working Group on an African framework for research ethics during outbreaks of emerging and re-emerging infectious diseases.
Dr. Litewka completed his medical degree at the University of Buenos Aires and his master's in public health at the University of El Salvador, also in Buenos Aires, Argentina. He is a faculty member in the University of Miami (UM) Department of Surgery and the director of global bioethics at the UM Institute of Bioethics, a World Health Organization (WHO) collaborating centre in Ethics and Health Policies. Dr. Litewka' s work at the UM Institute of Bioethics focuses on the development of research and education activities with governmental organizations, universities and the private sector on human subject protection and the responsible conduct of research. From 2005 to 2018 he was the International Director for the Collaborative Institutional Training Initiative (CITI Program), a web-based initiative for research ethics and responsible conduct of research education. During 2011 he served as a member of the International Research Panel at the U.S. Presidential Commission for the Study of Bioethics Issues.
Eric Juengst is a Professor in the Departments of Social Medicine and Genetics, Core Faculty in the UNC Center for Bioethics, and Co-Investigator in the Center for Genomics and Society at the UNC-Chapel Hill School of Medicine. His research interests and publications focus on conceptual and ethical issues raised by new advances in human genetics, genomics, and biotechnology, including the challenges of genetic testing and screening, genomic sequencing and “precision medicine," population genetic research and human genetic modification. Dr. Juengst received his B.S. in Biology from the University of the South in 1978, and his Ph.D. in Philosophy from Georgetown University in 1985. Before moving to UNC in 2010, he taught medical ethics and the philosophy of science on the faculties of the medical schools of the University of California, San Francisco, Penn State University, and Case Western Reserve University, where he directed the Center for Genetic Research Ethics and Law from 2005-2010. From 1990 to 1994, he served as the first Chief of the Ethical, Legal and Social Implications Branch of the National Center for Human Genome Research at the U.S. National Institutes of Health. He has also served on the NIH Recombinant DNA Advisory Committee, the March of Dimes National Ethics Committee, the DNA Advisory Board for the FBI, the Human Genome Diversity Committee of the National Academy of Sciences, and the NIH National Council for Human Genome Research.
Tiwonge Kumwenda Mtande
Tiwonge Kumwenda Mtande is a PhD candidate in Clinical and Research Ethics at Stellenbosch University, RSA. She holds MSocSci in Health Research Ethics from University of KwaZulu-Natal and a BSc in Biology from University of Malawi. She works as Deputy IRB Administrator at Kamuzu University Research Ethics Committee (KUREC; formerly known as COMREC). And, she is a Research Fellow for a project aimed at developing research ethics online training curriculum at Kamuzu University of Health Sciences (KUHeS) in Malawi. Before joining KUHeS, Tiwonge was the IRB Officer, overseeing ethics and regulatory aspects of clinical trials at UNC Project, a Biomedical Research Institute in Malawi. While at UNC Project she led the empirical work that contributed to the development of an international ethics guidance for involving pregnant women in biomedical research. Her doctoral research is around ethics of pragmatic clinical trials in low resource settings. Much of Tiwonge’s research work focuses has IRB operations, ethics of alternative clinical trial designs, public health research and global bioethics.
Dr. Effy Vayena is a Professor of Bioethics at the Swiss Federal Institute of Technology Zürich (ETH Zürich). She investigates how advances in science and technology can be ethically applied for best outcomes in public and personal health. Vayena completed her education as a social historian with a PhD in Medical History from the University of Minnesota and a habilitation on Bioethics and Health Policy at the University of Zurich. A keen interest in health policy led her to work for the World Health Organization where she served as a technical officer for several years. Upon her return to academia, Vayena was awarded a Swiss National Science Foundation professorship and founded the Health Ethics and Policy Lab. The lab's purpose is to tackle ethical questions that arise at the cutting edge of biotech research, in areas such as genomic technologies and big data analytics for healthcare. Vayena has been appointed Faculty Associate at the Berkman Klein Center for Internet & Society at Harvard University, where she was previously a Fellow. She has published over a hundred peer-reviewed articles and book chapters and co-edited several books. Vayena is also an elected member of the Swiss Academy of Medical Sciences and chairs the Ethical, Legal and Societal Implications advisory group for the Swiss Personalized Health Network. She is a member of the World Economic Forum's advisory board for the Global Risks Report. She co-chaired the WHO's expert advisory group on Artificial Intelligence health ethics and governance. In 2021 she was named chair of the Greek National Bioethics and Technoethics Commission.
Nezerith Cengiz is a bioethics graduate presently working as a junior researcher on the REDSSA project at the Centre for Medical Ethics and Law, Faculty of Medicine and Health Sciences, Stellenbosch University. She completed her MSc in Bioethics and Health Law at the Steve Biko Centre for Bioethics at the University of the Witwatersrand. Her dissertation focused on artificial intelligence (AI) in health care and virtue ethics. Other research-related interests include the ethics of xenotransplantation. Nezerith has worked as a research assistant in vascular surgery, ophthalmology, and data science. She has served as a Research Ethics Committee member on the Hospice Palliative Care Association of South Africa and currently serves on the Tygerberg Hospital Clinical Ethics Committee.