‘Data ethics and bio-banking’ Rumors and Fear Endanger Feasibility of Biobanking in Liberia: Culturally-Congruent Standards Are Needed to Ensure Trustworthiness MANDELLA KING St. Joseph Catholic Hospital, Liberia ISGlobal, Spain ‘Data ethics and bio-banking’ 8th GLOBAL FORUM on BIOETHICS in RESEARCH South Africa NOVEMBER 13-14,2018

The SJCH aims to provide the best quality of health care through implementing evidence based practice and the use of quality improvement methods within available resources. The Liberia Medicines and Health Products Regulatory Authority is an autonomous agency under Presidency to regulate the conduct of clinical studies; the registration, quality control, post- marketing surveillance of health products. ISGlobal's mission is to improve global health and promote health equity through excellence in research and the translation and application of knowledge.

2016-2017: Saint Joseph’s Catholic Hospital (SJCH) & ISGlobal BACKGROUND 2017-2019: SJCH, Liberia Medicines and Health Products Regulatory Authority (LMHRA) & ISGlobal 2016-2017: Saint Joseph’s Catholic Hospital (SJCH) & ISGlobal Strengthening laboratory capacities in the St. Joseph’s Catholic Hospital for clinical trials on infectious diseases (SELeCT) Improved Governance and Research Capacities in Diagnostics for Infectious Diseases of the Liberian Medicines and Health Products Regulatory Authority (IGORCADIA)

BACKGROUND Mixed-methods study (2016-2017) Quantitative component to asses malaria prevalence among pregnant women at first ANC visit Qualitative component to explore perceptions on clinical research A group of ten traditional leaders received training in medical research and were invited to constitute a Community Advisory Board (C.A.B) To explore drivers of acceptability to engage in research that may involve collection, transportation, storage, and the use of blood specimens

CHALLENGES 1. Cultural Issues/believe 2. Lack of accountability/good governance 3. Limited access to free healthcare services 4. Fear of discrimination 5. Lack of trust in healthcare and researchers 6. Fear of commercialism participant for researchers benefit

CULTURAL ISSUES ‘Blood samples should be given only in clinical areas’. ‘Any blood outside clinical areas is for illicit purpose’.

LACK OF ACCOUNTABILITY Lack of information on the purpose of blood collection, shipment and storage of samples Who is benefiting??

ACCESS TO HEALTHCARE Volunteers may expect some therapeutic benefit associated with the sample donation

DISCRIMINATION Use of samples for additional testing purposes (HIV, hepatitis)

LACK OF TRUST The medical practitioner and traditional leaders will benefit by selling the blood to researchers

RESEARCHERS BENEFFIT The researcher will take profit of the sample donated

RECOMMENDATIONS Community education Clear accountability and good governance Benefit sharing plan agreed between research, regulatory, hospital staff and the affected community Totally anonymized consent More research on biobanking strategies

THANKS