13th Forum – Stellenbosch, South Africa, 13-14 November 2018

Theme of the Meeting
Ethics of data sharing and biobanking in health research

The Wellcome Trust and the South African Medical Research Council

Supported by:

  • The Wellcome Trust
  • Medical Research Council-United Kingdom (MRC UK)
  • Bill & Melinda Gates Foundation
  • National Institutes of Health-Fogarty International Center (NIH-FIC)
  • The South African Medical Research Council

Planning Committee

Members of the Planning Committee for this meeting were:

Jantina de Vries, University of Cape Town, South Africa;

Niresh Bhagwandin, Medical Research Council, South Africa;

Calvin Ho, National University of Singapore, Singapore;

Athula Sumathipala, Keele University, UK and Institute for Research and Development, Sri Lanka;

Susan Bull, Oxford University, UK;

Claudia Emerson, McMaster University, Canada;

Naomi Waithira, Mahidol Oxford Tropical Medicine Research Unit, Thailand;

Fabiana Arzuaga, Advisory Commission on Biobank, Ministry of Science, Argentina;

Gloria Mason, National Research Ethics Board, Liberia;

Doug Wassenaar, University of KwaZulu-Natal, South Africa;

Ross Upshur, University of Toronto, Canada;

Katherine Littler, Wellcome, UK.

Programme and Presentations

Programme details

The conference booklet includes the meeting agenda, case study write-ups, policy papers and abstracts for the Pecha Kuchas and posters.



Videos of the presentations are available here.




Theme 1: Respecting participants and communities


Theme 2: Advancing good governance – national developments


Theme 3: Advancing good governance – international aspects


Summary of day 1

Mike Parker, University of Oxford, UK and Phaik Yeong Cheah, Mahidol Oxford Tropical Medicine Research Unit, Thailand (video only)



Theme 4: Promoting equity


Theme 5: Policy and guidance


Key themes panel (video only)

  • Theme 1:Susan Bull, University of Oxford, UK
  • Theme 2: Niresh Bhagwandin, South African Medical Research Council
  • Theme 3: Ross Upshur, University of Toronto, Canada
  • Theme 4:Naomi Waithira, Mahidol Oxford Tropical Medicine Research Unit, Thailand
  • Theme 5: Fabiana Arzuaga, Ministry of Science, Technology and Productive Innovation, Argentina

Conclusions, presentation of Pecha Kucha, poster award and GFBR award (video only)

Carla Saenz, Pan American Health Organisation, USA and Teck Chuan Voo, National University of Singapore, Singapore

A background paper was prepared in advance of the meeting and provides an overview of the key ethical issues raised by this important topic.

A meeting report and slide deck are also available.

We are very interested to hear about participants’ post-meeting activities. Please do keep us up-to-date by emailing gfbr@wellcome.ac.uk.

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