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29th January, 2019

Middlesex academic investigates the governance of data sharing for health related information in Africa


Senior Lecturer in Law, Dr Ciara Staunton, is developing a two-day workshop at the beginning of February in Cape Town with key participants from Africa to discuss the impact of data regulations on genomic and health research.

Despite the changes in many high and middle income countries on data protection, most African countries lack similar regulations.

The workshops will bring together experts in law, ethics, bioinformatics, government and industry.

One of the speakers will be Professor Thuli Madonsela, a South African advocate and Professor of law. In 1996 Professor Madonsela helped draft the final constitution of South Africa which was made law by President Mandela. In 2014 Time magazine named her as one of the 100 most influential people in the world in the Leaders category and described her as “an inspirational example of what African public officers need to be”.

“In high and middle income countries there has been increasing focus on the governance and regulation of health data sharing and protection but there has been very little consideration for protection for genomic and other health related data in the context of low and middle income countries.” Dr Ciara Staunton

The workshop begins the process of developing guidelines for legislation on data sharing in African countries.

Dr Staunton’s project involves two key collaborators, Associate Professor Jantina de Vries and Dr Nóra Ni Loideain.

Jantina de Vries is an Associate Professor of Bioethics at the University of Cape Town. Her work focuses on developing ethical best practice for genomics research and biobanking in Africa.

Dr Nóra Ni Loideain is Director and Lecturer in Law at the Information Law and Policy Centre at the Institute for Advanced Legal Studies, University of London.  Nóra’s legal expertise and scholarly contributions to this project will be informed by, and build on, her academic networks and research undertaken to date at the University of Cambridge, University of Johannesburg and University of Cape Town on the impact of EU data privacy law in Africa.

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