Jantina De Vries

Senior Researcher in Bioethics Department of Medicine University of Cape Town

Jantina De Vries

Senior Researcher in Bioethics Department of Medicine University of Cape Town
jantina.devries@uct.ac.za

Biography

Dr. Jantina De Vries
Senior Researcher in Bioethics
Department of Medicine
University of Cape Town

Email: jantina.devries@uct.ac.za

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).

Title of the talk: Ethics engagement in H3Africa: developing consent and ethics guidelines for African genomics research and biobanking.

H3Africa research and the introduction of large-scale genomics and biobanking approaches on the continent, have brought to light a number of important ethical challenges that need to be considered and addressed. Important amongst these are considerations of consent, community engagement and fairness in international collaboration. Over the past few years, H3Africa has fostered several ethics initiatives that cumulatively build an evidence base and ethics framework for the successful conduct of such research. In this presentation, I will report on the Ethics Consultation Meetings held by the H3Africa Consortium in three consecutive years and will describe the H3Africa Ethics and Governance Framework for African Genomics Research and Biobanking that was developed as a result. This framework can guide the further development and conduct of genomics research on the continent, and foster ongoing ethics discussions around genomics research.