The Global Forum on Bioethics in Research held a meeting in Cape Town (South Africa) last November 13th -14th 2018. St. Joseph’s Catholic Hospital was represented by Mandella King, a Physician Assistant and member of the research team in the IGORCADIA project. The meeting brought together more than 90 participants from over 36 countries. The objective of the forum was discussing and finding solutions to ethical issues in data sharing and biobanking in health research, and also promoting open global dialogue on how to address the challenges and embrace the opportunities for sharing data samples ethically and equitably. The host organizations of the forum were the Welcome Trust, and South Africa Medical Research Council.
Meeting other participants provided the opportunity to share opinions, thoughts, and suggestions about challenges faced in data sharing concerning my individual Case study presentation “Rumors and Fear Endanger Feasibility of Biobanking in Liberia”, participate in direct discussions with a breakout group discussion about challenges faced in data sharing. Each case presentation was arranged under a particular theme, including respecting participants and community, advancing good governance-national developments, advancing good government-international aspects, and promoting equity and policy guidance
Some of the Challenges outlined were the lack of capacity building, traditional believes, no credits given to researchers, the use of data only by big brothers/high middle income countries and the proper benefit sharing plans. After the two days’ forum, the main outline recommendations included: sponsors and local government should support short long terms capacity building for timely data sharing, promoting research that respects traditional believes, researchers involving in research must be recognized for their work done and data should also be requested and used by LMIC.
Mandella King expressed his thanks to Br. Peter Lansana Dawoh, St. Joseph’s Catholic Hospital Director, for the opportunity to explore new environment and people. He also thanked Mr. Alfredo Mayor, IGORCADIA Principal Investigator, for his tireless support in preparing him for the challenge, Mr. Guillermo Martinez, case developer, Mrs. Christine K. Tarr-Attia, Ms. Cristina Munoz and Mr. Athula Sumathipala.