1. ‘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

2. 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.

3. 2016-2017: Saint Joseph’s Catholic Hospital (SJCH) & ISGlobal
BACKGROUND
: SJCH, Liberia Medicines and Health Products Regulatory Authority (LMHRA) & ISGlobal
: 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)

4. 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

6. 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

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

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

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

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

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

12. RESEARCHERS BENEFFIT
The researcher will take profit of the sample donated

13. 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

14. THANKS