12:00-12:30 Is Africa ready to share its genomic data?

Presenter: Prof Jantina de Vries
Presenter: Prof Nicola Mulder

Prof Jantina de 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).

Prof Nicola Mulder

Professor Nicky Mulder heads the Computational Biology Division at the University of Cape Town, and leads H3ABioNet, a large Pan African Bioinformatics Network of 27 institutions in 17 countries. H3ABioNet aims to develop bioinformatics capacity to enable genomic data analysis on the continent. Prior to her position at UCT, she worked for 9 years at the European Bioinformatics Institute in Cambridge, as a Team Leader. At UCT her research focuses on genetic determinants of susceptibility to disease, African genome variation, and microbial genomics and infectious diseases from both the host and pathogen perspectives. Her group provides bioinformatics services and develops new algorithms for the analysis of complex African genetic data. Prof Mulder is actively involved in training and education as well as curriculum development in Bioinformatics and Genomic Medicine. She co-chairs international committees on Bioinformatics education and sits on a number of Scientific Advisory Boards for African and International projects.

Exploring practical and ethical challenges to ensure sharing is fair and sustainable.

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. Drawing on the example of the H3Africa Consortium, we will explore practical and ethical challenges to the broad sharing of African genomic and other data, and discuss how data can be shared in a way that is fair, sustainable and of benefit to research participants, patients and African institutions.