There is an increasing recognition of the importance of including benefit sharing in research programmes in order to ensure equitable and just distribution of the benefits arising from research. Whilst there are global efforts to promote benefit sharing when using non-human biological resources, benefit sharing plans and implementation do not yet feature prominently in research programmes, funding applications or requirements by ethics review boards. Whilst many research stakeholders may agree with the concept of benefit sharing, it can be difficult to operationalise benefit sharing within research programmes. We present a framework designed to assist with identifying benefit sharing opportunities in research programmes. The framework has two dimensions: the first represents microlevel, mesolevel and macrolevel stakeholders as defined using a socioecological model; and the second identifies nine different types of benefit sharing that might be achieved during a research programme. We provide an example matrix identifying different types of benefit sharing that might be undertaken during genomics research, and present a case study evaluating benefit sharing in Africa during the SARS-CoV-2 pandemic. This framework, with examples, is intended as a practical tool to assist research stakeholders with identifying opportunities for benefit sharing, and inculcating intentional benefit sharing in their research programmes from inception.
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.
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 cooperation 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 cooperative 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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.