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

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

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 details

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

 

Presentations

Videos of the presentations are available here.

 

Keynotes:

• ‘How should we share?’ Susan Bull, University of Oxford, UK
• ‘Sharing is caring‘ Akin Abayomi, Global Emerging Pathogen Treatment Consortium

 

Theme 1: Respecting participants and communities

• Introduction to the theme
  Claudia Emerson, McMaster University, Canada
• Case study 1: Participant protection and good data governance for research using routine electronic records from a Health Information Exchange in the Western Cape Province, South Africa
  Nicki Tiffin, University of Cape Town, South Africa
• Case study 2: Respect for participants and communities: Education with cultural adequacy to conduct research in indigenous Peruvian communities about shared data and biobanking
  Agueda Munoz del Carpio Toia, Universidad Catolica de Santa Maria, Peru

 

Theme 2: Advancing good governance – national developments

• Introduction to the theme
  Doug Wassenaar, University of KwaZulu-Natal, South Africa
• Case study 3: Taiwanese experience in data sharing in biobanking
  Michael Tai, Chungshan Medical University, Taiwan
• Case study 4: Establishment of National Biorepository in Uganda: Some regulatory and ethical uncertainties
  Hellen Nasumba, Central Public Health Laboratories, Uganda

 

Theme 3: Advancing good governance – international aspects

• Introduction to the theme
  Athula Sumathipala, Keele University, UK
• Case study 5: Twenty years of ethical challenges in setting up and maintaining a twin registry and biobank in Sri Lanka
  Buddhika Fernando, Institute for Research and Development, Sri Lanka
• Case study 6: Rumours and fears endanger feasibility of biobanking in Liberia: Culturally-congruent standards are needed to ensure trustworthiness
  Mandella King, St. Josepth’s Catholic Hospital, Liberia

 

Summary of day 1

 

 

Theme 4: Promoting equity

• Introduction to the theme
  Jantina de Vries, University of Cape Town, South Africa
• Case study 7: The ethics of data sharing in the antenatal corticosteroids trial
  Sunil Vernekar, Jawaharlal Nehru Medical College, India
• Case study 8: Research Ethics Committees’ request for data sharing plan as part of the ethics review process: Data from the National Research Ethics Committees Survey in the Dominican Republic
  Julio Canario, National Research Center on Child and Maternal Health, Dominican Republic
• Case study 9: The Worldwide Antimalarial Resistance Network’s efforts to “level the playing fields” for data sharing by researchers in malaria endemic countries
  Karen Barnes, University of Cape Town, South Africa

 

Theme 5: Policy and guidance

• Introduction to the theme
  Calvin Ho, National University of Singapore, Singapore
• Presentation 1: A critical reflection on the development of a biobanking governance framework in Argentina
  Ana Palmero, National Ministry of Health, Argentina
• Presentation 2: India’s national guidelines on biobanking and data sharing and its ethical bearing on Indians
  Manjulika Vaz, St John’s Research Institute, India
• Presentation 3: Critical review of the current governance framework on research involving human biological specimens in Malawi
  Wongani Nyangulu, Dignitas International, Malawi
• Presentation 4: Governance of health data sharing in post-Ebola West Africa: Lessons, realities and prospects
  Alpha Ahmadou Diallo, University of Conarky and Ministry of Health Guinea

 

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.