Cristina Muñoz, project coordinator at St. Joseph's Catholic Hospital in Monrovia, presents the study's results and motivations, emphasizing that any activity involving blood is culturally sensitive.
For decades, research has flourished in Africa, and large volumes of biological samples and data have been transferred to developed countries for storage in biobanks and uncertain secondary use.
The transfer of biological samples and data within and outside Africa is still fraught with controversy in Liberia following the H3Africa project, which now aims to establish biobanks in Africa. In this regard, it is essential that ethical and legal governance structures exist to oversee the operation of these biobanks.
In early 2016, the Barcelona Institute for Global Health (ISGlobal) established a research collaboration in Liberia with St. Joseph's Catholic Hospital (SJCH) and the Liberia Medicines and Healthcare Products Regulatory Authority (LMHRA), with the participation of Juan Ciudad NGDO and Horizon funding from the European Commission's EDCTP2 program.
With these funds from the European and Developing Countries Clinical Trials Partnership, two ISGlobal-led projects (SELeCT and IGORCADI) were launched. Both aimed to develop the capacity of regulatory authority and hospital staff to conduct research on infectious diseases.
Cristina Muñoz in the SJCH Morovia laboratory in March 2019.
During the 2014-16 Ebola outbreak, many patients with infectious diseases other than Ebola (such as malaria) had their healthcare needs neglected. Leveraging ISGlobal's expertise in basic and applied research to develop new diagnostic and preventive tools for malaria prevention and elimination, these two projects have placed special emphasis on developing local capacity to support malaria research in Liberia.
In this context, the IGORCADIA team undertook to design and conduct qualitative research at SJCH Monrovia to understand community perceptions, contextual barriers, and opportunities regarding biological specimen storage for biomedical research in Liberia.
This component of the project has been achieved through the conduct of semi-structured interviews and focus group discussions among individuals with fever (temperature â„ 37.5ÂșC) or history of fever during the last week, pregnant women at their first antenatal visit, stakeholders from LMHRA, Community Advisory Council, medical, nursing and laboratory staff from Saint Joseph Catholic Hospital and the heme biobanking group.
Monrovia SJCH patient admission area.
Ethical issues related to biobanks
The results of this qualitative study have allowed us to extract some ethical problems that are listed below:
â Culturally any activity that involves blood is sensitive in nature.Liberians are accustomed to donating blood only in clinical settings. Exposure to the Ebola vaccine trials in Monrovia led some people to believe that samples from trial subjects were being collected for illicit purposes. Therefore, one thing that warrants thorough exploration before establishing a biobank at SJCH is how the public will interpret the request for blood samples for unspecified research.
â Communities are aware that during the Ebola epidemics, there were several initiatives that included the collection of samples that were sent abroad for research or public health purposes (i.e., Ebola vaccine trials, Ebola treatment centers, plasmapheresis units). Unless the governance and communicationCommunities invited to accept the Biobank in Liberia may perceive that the destination and use of exported samples cannot be controlled by local research staff and, therefore, that fair conditions for sample storage, retrieval, tracking, and disposal cannot be guaranteed for study participants.
â Due to the difficulties in accessing free healthcare services, there is a risk that a therapeutic error could motivate some people to participate in Biobanking research. If the Biobank is located in a hospital, it will be provided. clear information about risks, benefits and trade-offs necessary during the consent process to all persons contacted to avoid undue incentive to participate.
â There is a widespread fear that samples collected in clinical and research settings could be tested for stigmatizing diseases (i.e., HIV) against the person's will. This fear can make blanket consent inappropriate, as people may want to know the exact intended use of their samples and be assured that research staff will not perform certain diagnostic tests.
â There is one widespread lack of trust in the healthcare and research environmentA lack of trust will compromise informed, autonomous decisions to participate in biobank research. Methods to increase community members' trust should be thoroughly discussed with the CAB. However, some people may also have lost trust in their traditional authorities because some traditional leaders are allegedly collaborating with the Ministry of Home Affairs. Innovative, individually targeted approaches to improving trust need to be developed and implemented before establishing a biobank at SJCH.
â Regarding the export of specimens, a widespread rumor is that researchers monetize them abroad and manage to collect revenue that is never shared with the research communities. sustainability of a biobank In Liberia, this could depend largely on the recovery of operating costs. A fee-for-service system could increase this rumor. Apparently, according to the narratives of the study participants, some community members may not object to the commercialization of their samples if there is a benefit-sharing plan involving them and their communities.
By Cristina Muñoz, Coordinator of the IGORCADIA Project in Liberia.
Qualitative research at St. Joseph's Catholic Hospital in Monrovia: Understanding community perceptions on biological sample storage for biomedical research in Liberia.
More information: www.igorcadia.org
Project: Improving the governance and research capacity of the Liberia Drug and Health Products Regulatory Authority (IGORCADIA) in infectious disease diagnostics.
Project: Improved Governance and Research Capacities in Diagnostics for Infectious Diseases of the Liberian Medicines and Health Products Regulatory Authority
The EDCTP2 program is supported under Horizon 2020, the European Union's Framework Program for Research and Innovation
