Understanding biobanking: An assessment of the public engagement speaking book intervention Biobanking and Me

Abstract

While biomedical research based on genetically diverse data and samples from the African continent has incredible potential to address health issues, there exists the risk of exploitative research practices, particularly when studies are conducted in environments where public knowledge of scientific concepts may be lacking. [1,2] It is this exploitation that generates mistrust in research, and ultimately has far-reaching consequences. [1,3,4] Increased misunderstanding and mistrust undermine research potential, and become a barrier to public participation. In medical research, the costs associated with recruitment and retention of a diversity of sample donors are not just financial. A lack of donor diversity in a research study may result in the introduction of bias, and lead to disproportionate research activities into conditions or diseases that affect specific populations. [5] The value of creating and increasing public understanding of science through meaningful engagement platforms cannot be underestimated. For example, a study conducted on clinical trial enrolment and retention in Nigeria established that unwillingness of female respondents to participate in a clinical trial was strongly associated with low levels of awareness of and education on the clinical trials. [6] Meaningful engagement not only increases trust in science, based on positive perceptions of social benefit, but also promotes understanding of the relevance of science and research -which is imperative when attempting to garner support from the public, and government. [5,7,8] Positive science outreach can build strong coalitions and inspire members of the public to become champions in their communities. Science communication of broad key concepts to receptive communities becomes a gateway to more studyspecific engagement, and the active participation of stakeholders leads to capacity development and science translation. [1,9] Recent initiatives involving the co-operation of various consortia and government departments has led to a substantial increase in the number of biobanks in Africa. In general, biobanks are referred to as 'structured collections of biological samples and associated data, stored for the purposes of present and future research' . [10] Biorepositories that collect biological samples from humans can be defined as 'an organised collection of human biological material and associated data from participants, often stored for an unlimited period of time, for the purpose of health research, and managed according to professional standards under a documented governance structure' . [11] The principle of a standardised biobank that serves the research community clearly points to the involvement of a diverse multitude of stakeholders, all of whom must be engaged in order to increase the legitimacy and co-operative nature of biobanks. [1] While researchers in the biomedical field are knowledgeable regarding the technical aspects of genetic research This open-access article is distributed under Creative Commons licence CC-BY-NC 4.0.

Assessment of Biobanking Knowledge and Attitudes towards Biospecimen Donation among Healthcare Providers in Saudi Arabia

“…In this context, biobanks are important platforms that store vast amounts of samples, participants' biodata, and big data generated by high-throughput "OMICs" platforms [3,[40][41][42], which contribute significantly to the implementation of precision medicine to improve the quality of healthcare services provided worldwide. Although many studies have investigated the knowledge and attitudes of the public [24,[43][44][45][46][47][48], patients [43,[49][50][51], and universities students' [16,52] towards biobanks, there are few studies that focus on healthcare stakeholders, especially in developing countries such as Saudi Arabia. With this in mind, it is important to conduct an initial assessment of the general level of knowledge and attitudes toward biobanks in this geographic area before determining appropriate programs for education, awareness, and national adoption of biobanks.…”

Africa’s Bioinformatics Roots are grounded at UWC: O’Connell’s Vision for Innovation

“…Through this multi-national project that brought together 11 countries, PhD students at SANBI were at the very forefront of bioinformatics research, actively engaged in unravelling the genetic code of the tsetse fly and subsequently using that knowledge towards health interventions. The bioinformatics expertise available at SANBI to piece together the genetic code of an organism was subsequently sought after by international consortia including the Coelacanth Genome Project (Amemiya et al, 2013) and the Asian Seabass Genome Project (Vij et al, 2016).…”