Abstract
The global neuroethics discourse has gained prominence since the beginning of the 21st century. Perspectives on neuroethics have been drawn from USA, Asia, the European Union etc. In Africa, the discourse has been largely influenced by neurogenomics research and collaborations across countries in the region. As neuroethicists continue to propose considerations for framing neuroethics discourse in Africa, ethical issues arise from not only largescale neurogenomics research, but such other neuroscience and brain research projects conducted in heterogeneous societies on the continent. Such neuroscience research projects carried out in academic institutions and medical facilities are yet to be subjected to an investigation of ethical issues arising therefrom. This paper therefore took a departure from neuroethics discourse being shaped in neurogenomics and international collaborations to consider what ethical issues arise from neuroscience broadly across parts of Africa. We conducted a scoping review of neuroscience research and neuroethics publications, complemented by the snowballing method to investigate ethical issues arising from such research endeavors. The research was grounded in ubuntu principles as lens through which ethical, legal and social implications of African neuroscience research were viewed. Findings established ethical issues peculiar within the African neuroscience research context including inequitable access to neuroscience research, distrust, lack of research funding, imposition of foreign methods without standardisation within contexts, violence and use of restraints, threat to life and morbidity, etc as ethical issues of neuroscience in Africa.
Keywords: Neuroethics, Neuroscience, Africa, Brain research, Ethical challenges
Highlights
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A scoping method, complemented by snowballing increases sample for literature review.
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Stigmatisation is a major ethical challenge of neuroscience research in Africa.
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Ethical issues of neuroscience differ across brain research disciplines and regions.
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Neuroethics in Africa has been shaped largely by neurogenomics and largescale research.
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Other ethical issues are influenced by prevalent circumstances in African societies.
1. Introduction
Advances in brain research places the ethical challenges of developments into focus. Issues such as unintended consequences of neuroscience, risks of research methods and impact on society are addressed by guidelines and neuroethics protocols. In Africa, the neuroethics discourse has been advanced by contributions from neurogenomics and such other largescale research consortium on the continent (Akinyemi et al., 2020, de Vries et al., 2015c, de Vries et al., 2017, Jegede et al., 2023, Mulder et al., 2018) However, neuroethics as relating to neuroscience research in Africa has yet to be prominently addressed (Matshabane, 2021, Matshabane et al., 2024). The resultant effect of leaving out neuroscience research from African neuroethics discourse is that neuroscientific findings suffer from questions of data integrity, inability to advance international brain research collaboration (as a result of lack of neuroethics frameworks to govern data sharing), ethics-dumping, etc. The society is at risk where issues such as knowledge and capacity to conduct neuroscience research, impact of research, etc are not regulated by available neuroethics protocols. Thus, neuroscience research is unable to achieve its aim of providing solutions to brain diseases from which the continent suffers in varying degrees. An African neuroethics discourse that leaves out neuroscience research and its ethical issues will perpetuate societal distrust in research participation. We believe that promoting discussions on ethical issues of neuroscience research will impact framing neuroethics protocols that recognise African values, norms and practises to reflect heterogenous identity by which the continent is known. This paper therefore aims to explore ethical concerns in African neuroscience research by using the scoping literature review collaboratively with the snowballing method to map the neuroethics debate from African perspectives. This paper's first section will cover the development and historical context of neuroethics from a variety of theoretical angles. Following this, contributions made by neuroethicists on neuroethics in Africa will be highlighted. The discourse will be concluded with a justification of the approach being used, data collection methods, findings, and discussions.
The goal of this work is broadly categorised under three headings. First, to advance the field of global neuroethics discourse by highlighting contributions already made to the discourse from the continent. Secondly, ethical issues arising from African neuroscience research can be brought to the fore in order to be anticipated and addressed in future endeavors. Thirdly, the potentials of Africa ubuntu principles in its application towards ethics research can be further enhanced. The findings of this study will support the rigorous assessment of the neuroethics component of current and upcoming neuroscience research by institutional review boards and other ethics-approving bodies. These contributions will help advance models of framing neuroethics on the continent through an exploratory review of the discourse.
1.1. Background
1.1.1. Global neuroethics discourse and African perspectives
Neuroethics discourse has evolved over the years without an inclusion of its development from an African standpoint. (Conrad and De Vries, 2003) trace the history of neuroethics from activities of neuroscientists in the academia organising learning workshops aimed at advancing the subject. This first narrative recounts how workshops on themes surrounding neuroethics were organised since 2002 when the University of Pennsylvania, Stanford and UCSF hosted two different national conferences on “neuroethics”. The former had the theme “Bioethics and the Cognitive Neuroscience Revolution” while the latter, sponsored by Dana Foundation used the theme “Neuroethics: Mapping the Field”. Since then, neuroethics has been embedded in neuroscience research projects around the globe. In proposing neuroethics questions aimed at guiding ethical research of neuroscience, (Rommelfanger et al., 2018) identified ethics protocols within ongoing neuroscience research, drawing from their components to advance their argument for cultural perspectives towards neuroethics. The European Union Human Brain Project dedicated resources to ethical issues of research, instituting dedicated work packages on the subject (Amunts et al., 2016). Underscoring the importance of neuroethics component of neuroscience research, the EU HBP also facilitated further neuroethics discourse supporting the neuroscience research (Greely et al., 2016). The Australian Brain Initiative, Japan Brain/MINDS, Korean Brain Initiative, and the US BRAIN Initiative embedded neuroethics committees within neuroscience research while Canadian Brain Research Strategy had a neuroethicist on its neuroscience committee.
The International Brain Initiatives, comprising of neuroscientists and other stakeholders around the world documented such views from Chinese, Korean, Japanese, the United Kingdom and USA, yet perspectives from Africa, with its heterogeneous population, was not included in the discourse (Rommelfanger et al., 2018a). According to (Matshabane, 2021, Matshabane et al., 2022), the neuroethics discourse from the African perspective is missing within global discourse.
1.1.2. Neuroethics in Africa
Leading neuroethicists in Africa have advanced various considerations towards shaping neuroethics discourse on the continent. As early as 2012, (Vries and Pepper, 2012) addressed the ethical issue of inequality. The authors advocated instead that genomic research must be equitable, benefitting Africans. (Palk and Stein, 2020, Stein and Giordano, 2015) also enumerated concerns arising from the emerging field of neuroethics. Advancing the importance of a collaborative research involving communities, (Pratt and de Vries, 2018) stressed inclusion in research governance to guarantee ethical research. Ethical issues such as guaranteeing consent from an informed perspective, within psychiatric genomic research was presented by (Kamaara et al., 2020). Other authors investigating ethical implications of psychiatry in genomic research identified risks (Palk et al., 2019). The H3Africa genomic research investigated ethical issues of consent, governance framework for biobanking, etc from the perspectives of research ethics committees (de Vries et al., 2015c, de Vries et al., 2017, Mulder et al., 2018, Munung et al., 2016). An investigation into how Research Ethics Committees could further inclusion regarding recruitment of research participants in psychiatric research was conducted by (Palk et al., 2020).
In recent years, genomic research has advanced neuroethics with research carried out on regulatory framework of countries involved in multicenter studies (Wolde et al., 2021) while (Matshabane, 2021, Matshabane et al., 2024, Matshabane et al., 2022) prescribes issues such as culture, diversity, etc as issues to be addressed in advancing the African discourse on neuroethics. These contributions to neuroethics support the philosophy of shaping neuroethics discourse in Africa across different stakeholders; a communitarian feature of ubuntu knowledge.
The lack of neuroethics viewpoints from African neuroscience research is accompanied by many detrimental issues. Without established neuroethics guidelines, scientific discoveries from neuroscience research may be plagued by concerns about data integrity. Even if brain research findings are diverse and have a rich genetic makeup, sharing these data across international territories will be a difficult undertaking if the framework for neuroscience research does not include ethical guidelines for data ownership, preservation, and reuse. Colonialism in parts of the continent has contributed to a long history of fostering distrust. These historical misgivings are exacerbated when Western nations pursue research partnerships and collaborations with African counterparts but lack neuroethics guidelines that are culturally appropriate. The slow pace of collaborative efforts, due partly to limited contributions to neuroethics discourse on the continent will further widen the gap in neuroscience development between African countries and developed nations.
This paper therefore seeks to address the gaps in African neuroethics discourse by carrying out a literature review to answer the research question “What ethical issues arise from African neuroscience research?”. To the best of our knowledge, this research is one of few efforts aimed at advancing neuroethics by expanding the scope of the discourse towards investigating the following,
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perspectives from other neuroscience disciplines into neuroethics, and
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impact of neuroscience research on different African societies.
We use the scoping review that also includes presenting results to experts for their views and the snowballing method to ascertain ethical issues of African neuroscience research. We employ the Ubuntu philosophy and ethics communitarian approach to gain experts’ knowledge on ethical issues of African neuroscience research. We hold the view that this method strengthens the “ubuntu knowledge” philosophy of advancing diversified views on neuroethics, across neuroscience disciplines on the continent. The ubuntu principles are also applied as lens through which the ethical, legal, social implications of African neuroscience research are viewed.
This review can serve as the basis of strengthening the African neuroethics discourse by determining the ethical issues, peculiar societal nuances and cultural values that influence them as compared with neuroethics framework of other international neuroscience research projects. It is expected that this paper can further advance inclusion of perspectives not limited to largescale research collaborations or neurogenomics alone but also neuroscience research being conducted in hospitals, communities, academic research institutions, faith-healing centers, etc. We hold the view that heterogeneity of African societies influences diversities that must be given consideration for an inclusive neuroethics discourse on the continent.
1.1.3. Concepts and definitions
Definitions for “neuroscience” and “neuroethics” are considered necessary as a background to this research. “Neuroscience” is being used in an expansive manner to cover diseases associated with the human brain. It has been described as “a broad discipline that embraces technology at multiple scales to understand the brain and develop potential therapies”. It is also said to embody existing research from natural, physical and social sciences and humanities for a comprehensive understanding of the structure and function of nervous systems and the brain. (Buniak et al., 2014). We have adopted this extensive definition as an expansive model of studying the brain that incorporates different disciplines and evolving with the use of technology as a tool. This paper will reference different studies on brain diseases in Africa including stroke, Alzheimer’s, and other issues of mental health as constituting “neuroscience research” endeavors in Africa. The purpose will be to examine ethics-framing within these projects and societal influences even if those projects are not termed with the words “neuroscience research”.
Within the context of this research, “neuroethics” refers to how scientists respond to issues of concern that arise from conducting neuroscience research. The term has been defined as an international endeavor which should be “sensitive to the impact that context has on acceptance and use of technological innovation” (Lombera and Illes, 2009). The concept evolves with neuroscience research not only to ensure that scientists consider the impact of research on society but also on how research is conducted, how results are communicated and societal issues arising from the research. The way such issues are addressed is encapsulated into the neuroethics discourse. (Salles and Evers, 2017) believe that neuroethics could be properly understood as advancing neuroscience by identifying, critically addressing and illustrating the near-term to far-reaching-often expected-implications of the new technologies, findings about the brain and implementation of such technologies (Rommelfanger et al., 2018b).
1.2. Ubuntu Philosophy and principles
(Munung et al., 2021) traces the origin of ubuntu philosophy adopted as a way of life in many regions of Africa. Believed to be a Bantu term, the authors reference ubuntu as a communitarian ethic with norms and values including respect, care accountability, dignity, inclusivity, generosity, compassion. It has also been described as evolving and conceived differently amongst different people. (Idoniboye-Obu and Whetho, 2008) highlight various conceptions of the ubuntu philosophy as “African worldview, ideology, philosophy, community-based mindset, culture” and essentially as “the basis of African communal cultural life”. The authors further categorise ubuntu philosophy as “a value system” informing behavior with considerations for how others are treated. Ubuntu philosophy had been adopted in different research endeavours. In their research work on genomics governance, (Munung et al., 2021) identified seven principles guiding ubuntu in research including reciprocity, accountability, trust, deliberative consensus-based decision making, inclusivity, open sharing and solidarity (Bhuda and Marumo, 2022). We have further adapted authors’ conception of the seven principles of ubuntu in our diagram shown in Fig. 1 below.
Fig. 1.
Ubuntu principles employed in survey to support findings of literature review.
In this review, we applied ubuntu principles in two forms. Firstly, in carrying out surveys of experts to verify the findings of the literature review. African authors of neuroscience and neuroethics publications were contacted for their views through a survey which ensured freedom to express their thoughts and experiences on an otherwise delicate subject without any fear, pressure or undue influence. The decision to contact experts to verify findings of literature review is an option of scoping review and snowballing rarely adopted. Ubuntu principles of solidarity, inclusivity, accountability and consensus decision-making as shown in Fig. 1 above were thus applied to ensure that establishing ethical issues of neuroscience research was a collaborative effort, reflecting an African viewpoint beyond the sole decision of the authors through review of publications alone. A collaborative effort of generating new knowledge, employed in this context in a bilateral form by (a) first conducting unilateral literature review and then (b) subjecting such results of review to experts’ verification is clearly distinguishable from the traditional methods of carrying out reviews by simply collecting and analysing published articles. Secondly, the ubuntu principles were used in this research to classify ethical issues of neuroscience research within the context of Africa and its indigenous practices as shown in Table 1 discussed later in this paper. The principles were further contextualised in the recruitment of neuroscience and neuroethics experts who participated in the survey. We gained perspectives from 22 African countries spread across all the regions of the continent. Ubuntu in this research underpins inclusion, not only in diversity of knowledge but also of research participants in the survey. The review is Africa-focused, carried out in solidarity by the researcher and participants and influenced by African norms and values to identify ethical issues of neuroscience research on the continent.
Table 1.
ELSI and Ubuntu principles for ethics of African neuroscience research.
| S/N | ISSUE | ELSI FRAMEWORK | UBUNTU PRINCIPLES |
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| 1. | Consent |
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| 2. | Privacy | Ethical issue when rights of research participants for their identity to be protected is not respected. In some instances, within Africa, privacy is impossible due to communalism and communitarianism. |
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| 3. | Administering drugs and medication |
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| 4. | Morbidity |
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| 5. | Trust |
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| 6. | Violence and use of restraints |
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| 7. | Access to care, infrastructure and funding. |
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| 8. | Stigmatisation |
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| 9. | Recruitment methods |
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| 10. | Exclusion of prospective participants |
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| 11. | Gender |
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| 12. | Foreign methods and standardisations’ |
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| 13. | Equity, justice and fairness |
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1.3. ELSI framework and application in Africa
Ethical, Legal and Social Implications framework of identifying risks and challenges of research has been adopted in Africa, particularly in neurogenomics research projects. (Uvere et al., 2022) carried out research using the ELSI framework to investigate risk and challenges associated with stroke genomics and neurobiobanking research. The objective was to build research capacity amongst stakeholders on the project through training sessions and Focus Group discussions. (Akinyemi et al., 2020) used the ELSI as a protocol by which risks and challenges associated with biobanking and stroke genomic research in Africa could be identified and addressed. The authors’ aim was to find out peculiar influences of ELSI-related challenges and design solutions reflective of community engagement for governance ethical biobanking. The projects were intended to facilitate equity, justice, and trust by research participants in the biobanking research. These objectives are akin to Ubuntu principles which reflect Africans’ solidarity, drive for inclusivity, communitarianism and accountability to one another in the society.
1.4. Ubuntu principles and ELSI for African neuroethics
Ubuntu principles are capable of being applied within different research constructs (Seehawer, 2018). In this research, they have been used as lenses through which the ethical, legal and social implications of African neuroscience research are ascertained. The seven ubuntu principles applied in genomics governance serve as the basis for us to identify ELSI challenges of African neuroscience research (Munung et al., 2021). Principles such as reciprocity, accountability, trust, deliberative consensus-based decision making, inclusivity, open sharing and solidarity are values that guide African beliefs. Neuroscience research projects conducted on the continent must therefore reflect these norms as the basis of cultural neuroethics. The ELSI framework is integrated into these principles such that actions in neuroscience research, impact or consequences that negate these principles are considered as ethical issues. These principles by themselves serve as a pedestal upon which African neuroethics protocols may be built to reflect an identity for the continent and ensure research serves the benefits of its people in a just and equitable manner. Fig. 2
Fig. 2.
Ubuntu principles and ELSI framework for African neuroscience research.
2. Methodology
2.1. Type of review method
The scoping/mapping literature review method is deemed acceptable for this research as it provides insight into the scope and diversity of neuroethics research efforts in Africa. It is even more appropriate in this discourse area where a thorough evaluation has not yet been completed (Fulop et al., 2001). A scoping review will also aid in identifying gaps in the literature and offer thorough findings regarding this discourse area. Alternative methods of review, such narrative, descriptive, or systematic, can pinpoint authors and a restricted number of articles related to the neuroethics debate. However, they may not adequately highlight the specific ethical concerns related to neuroscience in Africa or list the unique elements that influence these concerns.
2.2. Scoping review and snowballing
Also described as mapping reviews by (Anderson et al., 2008), scoping review answers research questions of “what” and “why” as opposed to “who”, “where” and “how” (Davis et al., 2009). (Arksey and O’Malley, 2005) describe a five-stage process of conducting a scoping review including (a) framing an appropriate research question. In this research, the question has been framed as investigating “ethical issues arising from neuroscience research in Africa”, (b) identifying relevant repositories, (c) selecting relevant publications and studies, (d) analysing the data and (e) summarising and presenting the results of findings. These suggested steps of conducting the review were adopted for this research. The authors (Arksey and O’Malley, 2005) further suggested that a way of validating the exercise may be to present findings to experts. This recommendation was adopted in this research to compare opinions of neuroscience and neuroethics experts on what ethical issues of African neuroscience research are with the results of the literature review.
As a complement to the scoping review process, this research considered other publications referred to in the few available literatures on neuroethics discourse in Africa. This research anticipated that such recourse would present a more comprehensive mapping of the subject reflecting vigour. The references in previous findings of few publications on the subject were thus interrogated. This method is described by Wohlin (2014a) as snowballing where “reference list of a paper or the citations to the paper identify additional papers”. The snowballing method prescribes a conclusion stage of conducting an inquiry into the opinion of experts on the findings from literature. This feature is also the last stage of the scoping review that both methods share in common.
2.3. Data Collection
(Arksey and O’Malley, 2005) recommend framing a research question as the first step of a scoping review of literature. In this review, the overarching research question of “what ethical issues arise from neuroscience research in Africa?” was influenced by the dearth of academic publications on neuroethics on the continent (Matshabane, 2021). The search string was then framed as “ethical issues in neuroscience research in Africa”. We limited the search string to words considered important such as “ethical issues”, “neuroscience” and “Africa”. It was anticipated that this research query would narrow down publications to reports of research into brain-related diseases and neuroethics. The second stage of scoping review is identifying appropriate databases or academic journals for research. PubMed repository was considered as appropriate since it is a database incorporating biomedical and life sciences. Several volumes of journal titles have been indexed by the repository over time. The online repository also compiles information from other life sciences articles indexed in MEDLINE which indexes about 20–25 % new biomedical titles. Of the over 14000 journal titles published globally, MEDLINE accounts for 5619 of them (Lindsey and Olin, 2013). It was anticipated that PubMed would contain large volume of work on the research topic. Fig. 3 below shows how the scoping method of literature review was combined with snowballing to conduct in-depth investigation resulting in a higher number of relevant publications on neuroscience research activities on the continent and sources of neuroethics discourse.
Fig. 3.
Steps of Scoping and snowballing review methods.
2.4. Inclusion and exclusion criteria
Articles that report neuroscience research activities carried out in Africa, comprising of all countries in the region qualified to be included in this review. These articles also included discussions on ethical issues and neuroethics discourse. However, articles on neuroscience research conducted outside the continent were excluded because the present review aimed to discover extent of research activities on the continent. Articles with content published in French or other foreign languages were also excluded as the research was not supported with translation services. However, articles in other languages with abstracts in English language were included.
2.4.1. Literature review process and results
The search string “ethical issues of neuroscience in Africa” inserted in PubMed to commence the search returned 180 published articles. Each of the articles was read to examine that they met the inclusion criteria. 72 papers were deemed to have met the criteria while 108 papers were excluded. This sample was considered small considering that the research expects to investigate different perspectives from about 52 countries of Africa. Using the same string on Scopus returned 7 papers none of which met the inclusion criteria. Google Scholar returned results already contained in the sample generated from PubMed. The snowball method was therefore deployed to complement the search. Snowballing method has been combined with systematic reviews (Wohlin, 2014b, Wohlin et al., 2022). Purposive sampling has also been used to investigate grey literature (Gomes et al., 2024), to enhance sample of publications for review and improve their diversities (Kirchherr and Charles, 2018).
Specifically, (Matshabane, 2021) made references to (de Menil et al., 2019, de Vries et al., 2015c) which were neuroethics publications from the H3Africa project, the African Ethics Working Group, etc. We were therefore intentional in specifically identifying other neuroethics publications. These publications were added to the sample and also helped unearth the African Journal of Neurological Sciences, a journal published in two volumes annually by Pan African Association of Neurological Scientists (PAANS) since 2004. All the volumes from 2004 till 2021 were read and a total of 244 publications were deemed to have met the inclusion criteria. This brings total publications reviewed to 316. Applying the scoping review method, all the publications were read at least twice to find out the neuroscience research being conducted, where it is being conducted on the continent, what the ethical issues were, the impact of the ethical issues arising from the research and whether it enumerated on neuroethics in Africa. Fig. 4
Fig. 4.
Selection process of publications for review.
2.5. Survey
The survey, as a qualitative method of research is one method of presenting findings (as the third stage of a scoping review) to experts for their opinion and validation. (Czaja et al., 2014) define surveys as the process of requesting information from a defined population that requires the use of pre-specified questions and in this research, self-administered by the respondents. Surveys have also been considered convenient due to the potential to assess a greater number of responses using standardised questions (Jain, 2021). Application for ethics approval was granted by the Research Ethics Committee of De Montfort University for experts’ opinions and Focus Group Discussions (FGDs). It was however challenging to host the FGDs owing to different time zones and availability of participants.
Microsoft Form was designed as survey and administered on the authors of African neuroscience research and neuroethics publications. Their identities were anonymised, and no personal questions was asked of the respondents. An identifier number was automatically generated by the Form. Electronic mails were sent to the authors of the published articles whose addresses were found on their publications. A written and informed consent with information sheet was attached as part of the mail and embossed on the survey. Responses were deposited in the Cloud server of De Montfort University and was passworded. Open-ended questions were framed to reduce bias and gain insights into African neuroethics generally without any inhibitions. (Ferrario and Stantcheva, 2022) opine that open-ended questions offer respondents freedom to write without being constrained and give perspectives that may otherwise have been missed had the responses being tailored in advance. One of the questions asked was “what ethical issues arose from their neuroscience research endeavours?” to verify the results from the literature search. Each survey took about 15 mins to complete.
3. Coding and analysis of literature review
Nvivo is a software provided by author’s academic institution with version 14 being the latest as applied in this research. The software helps to store data, and, in this case, the publications were uploaded on Nvivo to assist in coding through themes identified while reading the publications. Version 14 has been loaded with more visualisation types for data analysis. The software has been used previously in related research. (Bernauer et al., 2013, Bonello and Meehan, 2019, Elliott-Mainwaring, 2021, Qualitative Data Analysis with NVivo WWW Document, 2023). Ethical issues were identified as themes resulting from inductive qualitative content analysis. Parent codes were generated from labelling references to ethical issues. Sub-categories such as children codes were created as they were pinpointed during the review thereby employing the inductive process. Inductive review processes have been described as words emerging during the process of analysis (Armat et al., 2018).
The different publications were stored in Nvivo and identified as Files. The ethical issues identified were categorized as Codes. Children codes as sub-codes were other specific ethical issues, particularly related and linked to the each general or parent codes. References regarding each particular code were portions of each publication showing recurrence of that code in all the publications. These components made up the codebook designed for the review.
3.1. Sources of African neuroethics discourse
The review established three sources of neuroethics discourse in Africa as follows,
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Neuroethics publications: 56 publications from the sample collected discussed neuroethics and identified ethical issues associated with neuroscience research. Privacy, vulnerability of research participants, stigmatisation, matters related to race, sociocultural issues, inadequate access to care and morbidity were some of the ethical issues identified. A list of the publications is attached as supplementary document to this publication. From the 56 publications coded on neuroethics discourse, 23 addressed stigmatisations as an ethical issue in neuroscience research generated automatically from the software and shown in Fig. 5 below. Stigmatisation emerged as a focus of neuroethics discourse within the Africa context.
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Neuroscience research publications: This review considered ethical issues arising out of neuroscience research and clinical activities on brain diagnoses and treatments, provided they met the inclusion criteria. The review also identified ethical issues impacting society from each neuroscience research reported. This development justified the ubuntu principles for framing neuroethics i.e., identifying societal challenges resulting from neuroscience research. The ethical issues identified are highlighted in supplementary documents.
Some of the ethical issues identified gained significant references including the use of patient’s data in retrospective research, privacy concerns, consent issues, language, standardisation of foreign tools of neuroscience within the local context, etc. These foreign tools include measurements of cognition, severity of brain diseases, designed in developed countries for use on such citizens which requires proof of modification to the African context. Such modifications include translation into indigenous languages, conducting tests to ensure they return correct data from research participants in Africa. Dearth of skills and capacity to conduct neuroscience was identified from research activities reported in the publications. 227 references were made to sociocultural systems and communalism for accountability in neuroscience research. Ethical issues peculiar to Africa established from the review include morbidity (deaths recorded during neuroscience research) as a result of absence of health infrastructure for treatment, lack of research funding to cover access to care for research participants, etc. Other ethical issues peculiar to the continent include intellectual property and ownership of data, storage facilities, access and control, integrity of scientific findings, administration of drugs, application of foreign methods, violence and use of restraints, robbery, trusts and distrust, gender, language and comprehension, use of patients’ data for research, race, religion, communalism, vulnerability of research participants, western literacy and plausible discrimination against uneducated citizens thereby being excluded from research.
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International neuroscience research collaborations: 99 of the publications reviewed involved collaborations across international institutions. These are defined as collaborations from one African country to the other, across regions and neuroscience research involving neuroscientists from academic institutions outside the continent. The review established that clauses of ethics approval from supporting institutions were always present in such publications.
Fig. 5.
Neuroethics publications on stigmatisation.
3.2. Survey results and analysis
38 responses were received from the survey participants who identified as Neuroscientists, Mental Health Experts, and neuroscience research participants. Their spread is shown in Fig. 6 below identifying representations according to prominence of the country as designed by Microsoft Office Form. Nigeria, South Africa, Tanzania, Kenya, Uganda, Ethiopia, Ghana were few prominent countries.
Fig. 6.
Description of survey participants by country of neuroscience research.
The responses to the survey were uploaded on Nvivo which automatically classified all as a single file. The ethical issues highlighted were coded as references in Fig. 7 while the image was generated from the computer-assisted qualitative data analysis software (CAQDAS).
Fig. 7.
Ethical issues from survey responses.
Challenges associated with data-sharing across different national jurisdictions within international collaborations, governance procedures and conflicts featured prominently as ethical issues. Matters of obtaining consent from research participants was referred to as second highest ethical concern followed by privacy issues. The survey confirmed the findings of the review that issues related to consent was the most reoccurring concern in African neuroscience research. The survey also established ethical issues of challenges in ethics approval process by Institutional Review Boards (I.R.B) especially within international collaborations.
4. Discussion
Shaping an African perspective in the debate on neuroethics requires examining ethical questions related to neuroscience research on the continent. This section justifies the methods of review adopted and findings regarding ethical problems that are specific to Africa.
4.1. Complementary methods for enhanced literature review
At the outset of this paper, it was mentioned how little academic work has been done in Africa on neuroethics research. African perspectives on neuroethics have been absent from global discussions. This review identified publications on international neuroscience research collaborations, neuroscience research carried out by neuroscientists on the continent, and neuroethics discourse as sources of African neuroethics. Publications from the three sources often contain sections highlighting ethical approval for the research. The review looked at how society is impacted by neuroscience research and discovered that ethical issues are crucial to the discussion of neuroethics. When the scoping literature review approach and snowballing were combined, a sizable amount of data was collected on sources of neuroethics discourse, allowing for the consideration of several sources. Also, both methods were useful in unearthing publications from different sources, identifying ethical issues in an endeavor for which previous discourse had yet to be initiated. Findings were verified by collecting views from experts through the survey to compare the results from the literature review. Ethical issues around consent and stigmatisation were prominent further supporting the findings. This result confirms the usefulness of the snowballing strategy in broadening the diversity of data sources ((Kirchherr and Charles, 2018).
4.2. African perspectives as against universalism
This review was underpinned by ubuntu philosophy and principles that recognises creation of knowledge contextualised within African societal values and influences. Findings supported this view as peculiar factors determined the question of what ethical issues are in African neuroscience. Thus, this review established that recognising Africa’s original cultural identity and its peculiar ethical issues of neuroscience research is appropriate rather than advocating a universal neuroethics framework that seeks to modify or transform inherent cultural identities. The neuroscience publications reviewed identified ethical issues relating to absence of infrastructure limiting equitable access to benefits of neuroscience research. This peculiarity is not the case in developed countries and so while infrastructural deficit is an ethical issue in African societies, it is not the case in the western world. Neuroethical frameworks in developed countries will deal with challenges distinct from an African context in that regard. Whilst it is acknowledged that the discussion on ethics is general and common to humanity everywhere, application within different contexts transform such ethical issues as being acceptable in some places and rejected elsewhere. African perspectives on neuroethics are distinct, different and diversified across societies. However, in our opinion, gaining perspectives of experts spread across 22 African countries represents a fair distribution of neuroscience research activities presenting an outlook for the continent. Stakeholders are urged to understand how assumptions may bias hypothesis since the question of what is normal or abnormal, acceptable, or not in brain research is not universal. In this context, neuroscientists are advised to avoid research which excludes certain groups of peoples or members of the society and perpetuate biases on account of gender, disabilities, ethnicity, etc. Inclusive neuroscience research which involves active participation, recognising peculiarities within environmental contexts will not have its scientific findings questioned or misinterpreted. Diagnosis, treatments, and innovations from such research will not run the risk of being rejected as irrelevant.
4.3. Peculiar ethical issues from Africa
Ubuntu philosophy is capable of being applied within different ethical research processes. Consideration for indigenous values, norms, beliefs, nuances etc help to amplify issues within contexts. This research shows Ubuntu principles as outlined by (Munung et al., 2021) can be applied for governance of ethical issues within Africa along with other frameworks such as the ELSI. Ethical issues may be peculiar within African context not only in their emergence but also in their conception, perception and methods of proffering solutions. Such proposals must recognise norms, values and nuances entrenched as a way of life for Africans, i.e., within Ubuntu philosophy and its principles. In this section, we highlight ethical issues peculiar to African neuroscience research. A proposal on the application of Ubuntu principles to issues categorised into the ELSI framework is shown in Table 1.
4.3.1. Communalism associated with socio-culturalism
African societies are communal in nature. Values and decisions on daily activities are ingrained in communal structures guided by historic socio-culturalism. Participation in neuroscience research, determination of ethical issues and response to research activities are influenced in situations, not by the individual but the decision made by sociocultural systems in the society. This peculiarity distinguishes identification of ethical issues throughout neuroscience research activities on the continent from other developed countries. For example, while exercise of autonomy by a research participant is a right and an ethical issue, in parts of Africa, the power to exercise autonomy may be vested in community leaders and family members. (Abbo et al., 2019, de Vries et al., 2015c). In some instances, engagements with communities foster positive results and consider ethical conduct of research. (Anguzu et al., 2018, de Vries et al., 2015c). Unlike developed countries which have single family units in residence, in Africa, living is communal in nature. This cultural norm impacts on decision-making and quite distinctive from the western values of privacy, autonomy, etc. (Bitta et al., 2018). Africa however shares this feature with parts of the Asian continent.
4.3.2. Consent and privacy
Ethical issues of consent, identification, privacy, etc may be perceived differently across cultural contexts especially when balancing individual against public interests or common good. Also, definitions of privacy rights, governing legislations across boundaries of shared data may give rise to conflicts. This review identified relevant themes of consent issues, cognitive capacity to consent, data storage and access, publication of graphic images, use of patient’s data and retrospective research for discussion. Regarding consent issues, 234 publications were coded as showing ethical concerns of various issues relating to the grant of valid consent. Neuroscience research conducted included investigations involving children and participants lacking cognitive capacity to consent. (Anguzu et al., 2018). In some cases, caregivers or next-of-kin gave consent on behalf of participants (Akinyemi et al., 2019; Winje et al., 2018) and in other instances, they were the research participants themselves reporting experiences of patients suffering from brain diseases. It was established that some patients exercised their rights to withdraw permission for caregivers to be involved in research concerning their health issues. (Baron et al., 2018). The review also established that in 229 publications of neuroscience diagnosis and treatment, patients’ medical history and data were reported even though there was no means of identifying them by names. Still, their reports were accessed by neuroscientists in 155 retrospective research with no evidence of consent sought. Community-wide neuroscience research projects were also conducted with neighbours and community leaders referring research participants having identified their families as well (Asher et al., 2018). This development confirms the position of (Rommelfanger et al., 2018a) that deep cultural constructs may conceptualise privacy differently and place common good above any privacy rights of an individual. In some instances, the publications clearly showed the face of the participants and graphic details of ongoing surgical procedures. However, (Singh et al., 2017) blacked out the eyes of research participants in a community engagement on stroke diseases. Privacy rights were protected in the neuroscience research reviewed in literature through anonymisation of data (Fairall et al., 2018, Sibeko et al., 2018, Siewe Fodjo et al., 2021, Sogbossi et al., 2021) and pseudonymisation of participants’ particulars (Heunis et al., 2022, Spector et al., 2019). Devices used for research were passworded (R. O. Akinyemi et al., 2019) and stored in encrypted database (Spector et al., 2019, Wright et al., 2022). Deidentification process was also put in place (Green et al., 2020) while measures were taken to ensure research participants cannot be connected to data (Stevenson et al., 2019). Protection of participants rights to confidentiality, privacy, etc were enforced through data management plan put in place to guide data storage, access, data-sharing, and transfer. In (Adeoye et al., 2017), phenotype data were transmitted to a data management system outside the continent. (Akinyemi et al., 2018) established temporary, collaborating sites before samples were transported to the central biobank. Material Transfer Agreement was enforced in compliance with guidelines of Nigerian National Health Research Ethics Committee, the Nigerian Code of Research Ethics, and the H3Africa Data and Biospecimen Access Guidelines. This model has also been adopted in (Ekker et al., 2019, Idro et al., 2019, Petersen et al., 2018).
4.3.3. Administering drugs and medications
Thirty-eight (38) publications from the review showed the use of drugs to treat diseases in neuroscience research being conducted in Africa. This may be attributable to a high volume of neuroscience research resulting in patient’s diagnosis and treatment. Publications emanating from the latter accounted for 229 publications of the total 316. The review showed applications of medications by both traditional healers and orthodox hospitals (Abbo et al., 2019, Ofori-Atta et al., 2018). Drugs have also been prescribed for research participants with epilepsy and psychosis. (Baron et al., 2018). The efficacy of drugs for treating nodding syndrome has also been the subject of neuroscience research in (Anguzu et al., 2018, Idro et al., 2019). Patients with Alzheimer’s disease have been observed with the treatment of drugs (Cummings et al., 2018). Randomised placebo-controlled trials of oral vitamins have also been conducted on children to test neurodevelopment (Winje et al., 2018).
In some cases, administration of drugs on research participants presented side-effects as observed in (Asher et al., 2018). In another instance, the required drugs were not available (Doumbe, et al., 2020). These peculiar challenges question whether direct, collateral, social and scientific value-benefits of neuroscience research are readily available to participants or even foster societal wellbeing. Safe administration of drugs and anticipating impact on research participants or patients must be considered well in advance by neuroscientists. For example, the standard of drugs procured by participants in a neuroscience research, costs, affordability, etc were ethical issues discussed in (Idro et al., 2019). However, the review also showed ethics approval were sought and obtained for applications of drugs in neuroscience research as established in the treatment of nodding syndrome with doxycycline. In that case study, researchers received approvals from National Drug Authority in Uganda (Idro et al., 2019). Neuroscience research involving administration of drugs either on patient or control subjects should consider ethical issues of application. Side-effects could occur, this must be anticipated with provisions made for treatment and safety of research subjects. Application of drugs and medications within neuroscience research could potentially have far-reaching impact on research participants and the society.
4.3.4. Morbidity
Deaths occur in neuroscience research on the continent. It is therefore imperative to prescribe reporting processes adopted on the demise of research participants. Neuroscience research usually involves diseases which may lead to deaths. Stroke types, complications from hypertension and other diseases associated with the brain, usually resulting in deaths were reported in the review. (Cummings et al., 2018, Petersen et al., 2018, Singh et al., 2017, Zewdu et al., 2019) were some of the publications which reported research into morbidity of brain diseases and the need to educate the public on negative impact. Some patients die in the course of diagnosis, treatment or in the course of neuroscience research. For example, death of a participant in a neuroscience research occurred where family members were resistant to efforts to have a patient treated for schizophrenia (Asher et al., 2018). The review also showed a proactive approach by neuroscientists where cases of morbidities were anticipated with framework put in place to monitor potential harms, suicide, etc and reduce deaths (Fairall et al., 2018, Petersen et al., 2018, Wagner et al., 2021).
It has also been argued that some cultures in Africa make human sacrifices as part of treatment processes for brain-related diseases (Abbo et al., 2019). Morbidity may therefore be an intentional practise for traditional diagnosis and treatment of brain diseases. Neuroscience research is also being developed in Africa with the use of brain tissues in biobanking and anatomy only after demise of patients or research subjects. (Adigun et al., 2022, Adigun et al., 2021, Akinyemi et al., 2020, Akinyemi et al., 2018). Morbidity is therefore an ethical issue as neuroscience research may result in death or carried out after death. This has potential grave impact on the society. Ethics protocols must therefore include anticipating morbidities, providing care, and reporting mechanisms in cases of death.
4.3.5. Trust
Volunteering as a research participant in neuroscience research has been plagued by distrust. This could potentially limit research sample to provide credibility and integrity of scientific findings. Africa’s history of colonialism and previous narratives of exploiting data without informed consent has increased the level of distrust militating against acceptance of neuroscience research. Nine (9) publications in the review advanced different instances of distrust associated with neuroscience in Africa. (Abbo et al., 2019) discussed the challenge of collaboration between modern and traditional medicine to advance neuroscience even though Africa had advanced brain science for over 5000 years. (Anguzu et al., 2018) highlighted stakeholder perceptions, existence of myths surrounding brain diseases, lack of dissemination of scientific findings and results as factors fuelling distrust around neuroscience research. (R. Akinyemi et al., 2019a) cited fear of disfigurement of body during autopsy, mistrust of healthcare system, religious beliefs, anticipation that a brain-dead patient may recover as potential hindrances to brain donation for neuroscience research. (Asher et al., 2018) reported an instance of a research participant being treated abandoning the treatment process due to a breakdown of trust. Neuroscientists on the continent have proactively gained trust of research participants and their communities through holding collaborative meetings where the issue trust was central in discussions (de Vries et al., 2015c). Stakeholders also cited methods deployed to gain trust of research participants through framing mutual dialogues and feedbacks between researchers and study participants (Hailemariam et al., 2017), fostering transparency in research by holding regular meetings and discussing motivations (Singh et al., 2017, Souraya et al., 2018, Teriö et al., 2019).
4.3.6. Violence, use of restraints
The possibilities of violent conduct associated with neuroscience research was established. For example, treatment of patients suffering from brain diseases by religious centers and traditional practises entails use of chains and other forms of restraints. (Asher et al., 2018, Asher et al., 2017) noted that neuroscientists were concerned for their own safety and that of research participants in the study of schizophrenia whose sufferers could become violent. The use of restraints is controlled with patients monitored and evaluated from time to time. (Ofori-Atta et al., 2018). Another potential occurrence of violence has been highlighted in instances where tools of research, inclusive of technologies are subjects of theft and robbery. (Teriö et al., 2019). Subjects of brain diseases including epilepsy are also prone to harming themselves and being victims of violence from members of the public. They are also vulnerable to sexual and other violent abuses. (Komolafe et al., 2011) Well-intended neuroscience research could result in unexpected impact on members of the society jeopardising both physical, emotional, and psychological safety. The possibility of violent acts in neuroscience research is an ethical issue bordering on safety of neuroscientists, research participants and members of the public. This must be anticipated, and safety measures provided for conduct of a safe research.
4.3.7. Access to care, infrastructure, and funding
Neuroscience research may entail administration of drugs to correctly diagnose and proffer treatment solutions for research participants. Access to care through procurement of drugs, availability of health facilities with skilled medical personnel are exigencies to be anticipated in neuroscience research in Africa. This review established that neuroscientists envisaged the need to offer treatment (Spector et al., 2019) and where required, refer research participants requiring treatment or medical attention to appropriate health facilities upon being diagnosed (Petersen et al., 2019, Roberts et al., 2020, Robertson et al., 2020). However, there were also instances where the research funding was inadequate to provide equal medical attention to research participants or prospective subjects (Abas et al., 2018, Asher et al., 2018). Referrals from neuroscience research and treatments were sometimes met with inadequate access to care due to patient’s lack of funds (Adoukonou et al., 2019, Djientcheu et al., 2004, Doumbe et al., 2020, Komolafe et al., 2007, Lagunju et al., 2006, Mwang’ombe, 2018, Onakpoya et al., 2009; and sometimes because of absence of proper health infrastructure (Adeniji-Sofoluwe and Adeleye, 2011, Ayele et al., 2017, Cherif et al., 2010, Djientcheu et al., 2004, Doumbe et al., 2020, Mbourou et al., 2019, Nyungura et al., 2010, Ofori-Atta et al., 2018, Onakpoya et al., 2009). (Komolafe et al., 2011) established that even cost of traditional treatments was unaffordable making epileptic patients unable to access orthodox treatments. In Morocco, 70 % of the population of epileptic sufferers were unable to afford care (Serragui, et al., 2019). (Zewdu et al., 2019) afforded a study on barriers to accessing medical attention in neuroscience especially in the region and (Hailemariam et al., 2017) determined that absence of safe medication for neuroscience diagnosis and treatment is an ethical dilemma. Embarking on neuroscience research without availability of drugs and infrastructure will hinder quality participating and effectively impact integrity of scientific findings. Research participants may also lose trust in such endeavours after being diagnosed but left with no pathway of treatment or recovery.
4.3.8. Stigmatisation
In framing the question of stigmatisation after awareness of brain diseases, (Rommelfanger et al., 2018) identified the impact neuroscience research may have on research participants and their family members. The authors outlined how neuroscientists should reflect on participants' sense of agency, perspectives on the future which lies ahead after diagnosis, the role their family plays and the burden of the disease, etc. (Rommelfanger et al., 2018) posited that cultural practises in regions such as China and within Confucian context may result in families being stigmatised with mental illness considered as a social and public health problem. In Africa, the same culture exists where patients are subjected to stigmatisation, being deprived of social participation, ostracised from being married, etc (Komolafe et al., 2011). The review established that neuroscientists conducted studies on stigmatisation arising from brain diseases. (Pretorius and Sparrow, 2015) was a study conducted to consider challenges faced by patients of psychogenic non-epileptic seizures (PNS) in South Africa. The study posited that patients self-stigmatised, thinking the worst of themselves and being subjected to stigmatisation by others or even being discriminated against. (Zewdu et al., 2019) considered barriers to seeking care and stigmatisation of patients with alcohol use disorders, (Mbelesso, et al., 2016) examined the impact of cultural perspectives and religious beliefs on stigmatisation of dementia patients who were often aged. (Roberts et al., 2020) discovered high levels of stigma in Nigeria and other countries. (Campbell et al., 2021, Fairall et al., 2018, Hailemariam et al., 2017, Matshabane, 2021, Spector et al., 2019) conducted research into the impact of stigma on patients of brain diseases, including schizophrenia and methods of easing perceived discrimination. (Akinyemi et al., 2019) identified causes of stigmatisation of patients with brain diseases to include poverty for inability to seek medical treatment. Misconceptions about Parkinson’s disease, lack of knowledge of the origins of the ailment have been found to be the basis of society believing that sufferers should not be allowed to live within the community (Crombach and Siehl, 2018, Dekker et al., 2020, Ofori-Atta et al., 2018).
Stigmatisation could also be an unintended consequence of neuroscience research. Methods adopted in recruiting research participants, places where research is conducted may impact on loss of confidentiality occasioning stigmatisation. For example, epilepsy is a brain disease with associated myths occasioning stigma. (Agbetou, et al., 2021). Research however conducted on the disease had stipulated the condition of another person witnessing the episode as a factor to identify a patient. (Owolabi and Ogunniyi, 2015). Some of the studies on the disease have been conducted in schools (Doumbia-Ouattara et al., 2013, Nyungura et al., 2010) and it has been found that children have had to be withdrawn from school due to fear of infecting other students (Obiako, et al., 2014). Potential research participants have therefore withdrawn from neuroscience research due to stigmatisation (Crombach and Siehl, 2018, Munetsi et al., 2018, Wilson et al., 2016). Stakeholders have proactively managed stigmatisation because of participation in research by considering methods and protocols guaranteeing privacy and collaborative engagement of research (Campbell et al., 2021, Crombach and Siehl, 2018, Green et al., 2020, Mwesiga et al., 2019, Petersen et al., 2019, Petersen et al., 2018, Sibeko et al., 2018, Wagner et al., 2021).
4.3.9. Recruitment methods
This review identified issues associated with recruitment methods, adoption of foreign tools and standardisation, gender exclusion, integrity of scientific findings, western education and literacy, language of research, etc as ethical issues adversely affecting research findings. These factors may bias research findings, and they have been addressed in the publications being reviewed. In a mental health study in Ethiopia, neuroscientists outlined plausible assumptions prior to conducting a research and after the study, some of those assumptions were left unconfirmed (Asher et al., 2018) while others were found to be false leading to research participants discontinuing their involvement. In the study, participants recruited had the expectation of the research offering financial support and free medication. The practise in the environment was for non-governmental organisations to give free handouts and compensation for time spent in participating in the research. The credibility of scientific research may be questioned where participation and result may have been unduly influenced by compensation afforded the research participants. The data sample may also be found to be too small where it is impossible to recruit participants for refusal to advance monetary compensation or inability to do so making potential participants unrecruitable. (Abas et al., 2018, Consortium, the S.S. as part of the H., 2021, Anguzu et al., 2018, Souraya et al., 2018, Teriö et al., 2019). The obstacle of finding willing participants in neuroscience research in Africa has been addressed through accessing medical centers to recruit patients suffering brain diseases. The review established that participants were often recruited from medical facilities and referrals. (Abas et al., 2018; R. Akinyemi et al., 2019; Akinyemi et al., 2020, Akinyemi et al., 2018; R. O. Akinyemi et al., 2019b; Anguzu et al., 2018; Asher et al., 2017; Ayele and Yifru, 2018; Baron et al., 2018; Brooks et al., 2017; de Menil et al., 2019; Ekker et al., 2019; Hailemariam et al., 2017; Heunis et al., 2022)
Language of research may also occasion social bias. In this review, only publications reported in English language qualified for inclusion even though both English and French are official languages in Africa. Reflecting on this peculiarity forms the basis of anticipated further research in the future. While logistics of translations can be expensive with regards to funding and time inability to translate research materials into indigenous languages effectively excludes prospective research participants from being involved (Green et al., 2020, Smith et al., 2021, Teriö et al., 2019). Publications reviewed showed a proactiveness by researchers making provisions to translate research tools into indigenous languages. (R. Akinyemi et al., 2019; Akpalu et al., 2019; Asher et al., 2018; Azale et al., 2018; Catalao et al., 2018; Crombach and Siehl, 2018; de Menil et al., 2019; Fairall et al., 2018; Green et al., 2020; Hailemariam et al., 2017; Munung et al., 2016; Mwesiga et al., 2019; Ofori-Atta et al., 2018; Ojagbemi et al., 2018; Singh et al., 2017; Wedderburn et al., 2020).
4.4. Exclusion of prospective participants
Exclusion of participants without western literacy from neuroscience research was established. (Akosile et al., 2013, Sunmonu et al., 2008, Wagner et al., 2021). Awareness and willingness to participate in research has also been established to be connected to being educated up to the post-secondary education level. (R. O. Akinyemi et al., 2019b). Equally, some neuroscience studies examined the correlation between western literacy and population of patients of brain diseases (Manou et al., 2011, Ogunrin et al., 2005). Care must be taken for participants without western literacy not to feel discriminated against or become stereotyped for being patients because of not being educated according to western literacy.
4.5. Gender
Gender plays a significant role in the predominantly patrilineal family system in parts of Africa (Komolafe et al., 2011). The interdependence identifies the role of women who manage affairs of the home and are often caregivers (Akosile, et al., 2013). On the other hand, men and husbands are tasked with making decisions for every member of the family and the community. In research for finding cure to the nodding syndrome, it was found that community engagement involved only male members whilst the women were caregivers. (Anguzu et al., 2018). It is also not unusual to find neuroscience research based on relationship between gender and burden of diseases (Ayele and Yifru, 2018, Bitta et al., 2018, Brooks et al., 2017, Fountoulakis et al., 2021, Guadalupe et al., 2017, Ojagbemi et al., 2018, Wilson et al., 2016). Women may require permission from their husbands before volunteering to be part of the research. Scientific findings therefrom are affected by women being disposed to research when permission is granted (R. Akinyemi et al., 2019) while men may stay away for fear of being stigmatised or become of low esteem (Munetsi et al., 2018). This represents an “inherent selection bias” against women getting treatment and being involved in research (Ojo et al., 2020); (Catalao et al., 2018, Musa et al., 2012, Onakpoya et al., 2009). Neuroscientists have been addressing the issue of gender bias in neuroscience research by advocating education and reflexivity on social, economic, and cultural challenges (Komolafe et al., 2011, Matshabane, 2021) and deployment of purposive participant selection to ensure gender equity. (Asher et al., 2018, Asher et al., 2017).
4.6. Foreign methods, tools, and standardisation
Conducting neuroscience research in Africa with assessment tools developed in and for use in western countries may give rise to cultural or social bias. Findings from diagnosis, tests, etc could fail the integrity test due cultural differences in lifestyle, understanding and comprehension of research by participants, etc. (Vissoci et al., 2019) expressed concerns over Mini-Mental State Examination (MMSE) and the Montreal Cognitive Assessment (MoCA) used to measure cognitive impairment in Tanzania. Even though both scales had been culturally validated in most countries of the world, authors were sceptical that it had “ceiling effects” when applied to individuals with high education. The instruments were then subjected to back-translation protocol with bilingual Swahili translators hired to back-translate the Swahili models back to English language. In a psychosis treatment carried out in Ethiopia, the neuroscientists admitted that the reliability test of Brief psychiatric rating scale – extended version (BPRS-E) deployed to measure symptoms had not been assessed. In (Bitta et al., 2018), neuroscientists determined that a psychological autopsy tool developed locally “may be more appropriate for studying suicide”. Stakeholders have addressed these concerns for bias in results by validating tools within geographical and cultural contexts through translation, validation, adaptation, standardisation etc. (Guadalupe et al., 2017, Mutyambizi-Mafunda et al., 2019, Ojagbemi et al., 2018, Petersen et al., 2019, Sibeko et al., 2018, Stevenson et al., 2019, Teriö et al., 2019, Wahid et al., 2020, Winje et al., 2018). Indigenous stakeholders are also trained to use foreign tools. (Mbelesso, et al., 2016).
Data generated from neuroscience research and technologies applied have the potential of properly diagnosing brain diseases and offering solutions to health problems. Efforts should be made to ensure that this purpose is prioritised in neuroscience research. A significant rationale behind international collaboration is to harness new knowledge in combating brain diseases around the world. Envisioning misuse also requires neuroscientists considering what the public could consider misuses of data and technology. With the history of colonialism in Africa, the question of degree of trust in collaborative neuroscience research is valid. Data-sharing, transfer and access should be regulated through transparent means which prioritises benefits to African participants in research. (Beskow, 2016, Klitzman, 2022) discussed the lessons learned from the HeLa Cells where biospecimens were commercialised and used for an entirely different reason than what was originally intended. The potential utility of heterogeneous and diverse data which Africans are noted for hold enormous possibilities. Research participants and their families require giving consent for every use that data may be put to at every stage. It would amount to misuse where consent has not been given for use data is put to.
4.7. Question of equity and putting Africans’ interests first
Community engagement is deemed necessary to ascertain that the way in which that research is conducted would be for public benefit. This review identified ethical issues such as vulnerability of research participants (Anguzu et al., 2018, Asher et al., 2018, The H3Africa Working Group on Ethics, 2015a, Fairall et al., 2018, Hailemariam et al., 2017, Heunis et al., 2022, Nyungura et al., 2010, Robertson et al., 2020, Stevenson et al., 2019, Zewdu et al., 2019), inadequate research funding and foreign influence (Baron et al., 2018, Catalao et al., 2018, Hailemariam et al., 2017, Ofori-Atta et al., 2018, Owolabi et al., 2018, Petersen et al., 2019, Sejvar et al., 2013, Singh et al., 2017, Smith et al., 2021, Stevenson et al., 2019, Teriö et al., 2019), ownership of data and lack of access to scientific findings (Abbo et al., 2019, de Menil et al., 2019, The H3Africa Working Group on Ethics, 2015b, Heunis et al., 2022, Petersen et al., 2018, Smith et al., 2021), etc as matters of grave concern in African neuroscience research.
We further categorised the emerging results from this scoping literature review, comprising of collection and analysis of publications and complemented with a verification through experts’ opinions using the seven principles of African ubuntu philosophy for research as described by (Munung et al., 2021) and shown in our Table 1 below.
Table 1 therefore supports our assertion that ethical principles of research can be successfully identified and properly classified under ethical, legal and social issues (ELSI). Furthermore, the ethical issues can then be addressed using existing African norms, cultural practises and traditional systems represented through ubuntu philosophy.
5. Recommendations
(Rommelfanger et al., 2018) advocated increased roles of neuroscience stakeholders around inclusion, education and building policy frameworks for neuroethics that reflects cultural values, nuances, traditional beliefs, etc. This review establishes the need to consider ethics-framing as pivotal to neuroscience research itself. Though paucity of funds and lack of infrastructure hinders neuroscience research, investigating ethical issues within Africa’s cultural yet heterogeneous settings must be prioritized as well. A multi-stakeholder approach towards defining ethical issues, drafting guidelines and policies will guarantee inclusivity and promote trust in neuroscience research by participants.
6. Limitations
The sample of publications reviewed was limited by language in that articles published in French were excluded from the research. Publication which had their abstracts translated into English language were however included. Also, it was discovered that the term “neuroscience” may have limited the search results from the repositories. Use of other words such as “psychiatry”, “mental health”, “brain diseases” and words describing specific ailments associated with the brain in the search string may have increased the sample size. It is suspected that using other phrases in the search string that directly addresses ethics of research in specific brain or mental health research may yield more publications.
6.1. Bias and reflexivity
As Africans, the authors engaged in discovering the trajectory of neuroethics discourse on the continent to establish that neuroscience research projects are actually being carried out in Africa. This was the rationale for conducting a scoping review of publications regarding neuroscience research rather than concentrating on only articles on neuroethics discourse. The question of ethical issues from neuroscience research may be best addressed within communities and societies whose values reflect on their beliefs. Conceptualising ethical issues within deeply cultural and religious societies as exist in Africa may be influenced also by these practises. Neuroscience stakeholders must reflect on the peculiar issues plaguing the continent from slavery era to colonialism and post-independence in promoting neuroscience in Africa.
7. Conclusion
The objectives of conducting a review were to determine the ethical issues arising from neuroscience research in Africa. Countries where neuroscience research were being conducted were identified. In addition to publications primarily based on neuroethics, a snowballing method was also applied to trace other neuroscience research publications to discover whether they raised ethical issues and how they were addressed. This review therefore established the sources of neuroethics discourse on the continent including neuroscience publications, neuroethics discourse and international neuroscience research collaborations. Using Ubuntu principles as a guide, ethical issues were identified. It was established that neuroscience research projects contained elements of seeking consent from participants and approval from educational institutions and government agencies. International collaborations however presented robust neuroethics frameworks as posited by (Matshabane, 2021). This development suggests that research on neuroethics requires to be prioritised to give visibility to ethical issues emerging from African neuroscience. The peculiarities associated with African neuroethics were evident in the ethical issues identified as influenced by cultural values of socioculturalism, religion, dearth of infrastructure and access to care, distrust, consent, stigmatisation, etc. The review was able to present sources of neuroethics discourse in Africa, ethical issues of neuroscience research, their influences and distinction from perspectives emanating from developing countries.
Future research
Investigating ethical issues in neuroscience research which focuses on communities, neuroethics discourse on specific types of brain disease may yield more scientific findings. Applying the scoping review method envisages engaging other research methods such as surveys, interviews to validate findings from the review.
CRediT authorship contribution statement
Adebowale Owoseni: Supervision. Kutoma Wakunuma: Supervision. Oyeniji Oluyinka Abiodun: Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization.
Ethics approval
Worktribe Ethics Application process was approved by Research Ethics and Integrity department of the De Montfort University. Written informed consent was obtained from survey participants (also embossed on survey forms) after Information Sheet was made available to them. No personal details were collected, collected data was anonymous, encrypted and secured on electronic device passworded. Approval was granted by the De Montfort University to conduct this research.
Funding
This work is a deliverable of first author’s PhD research fully funded by the European Union Human Brain Project under the Horizon 2020 Framework programme with Award Number: Specific Grant Agreements No. 945539 (Human Brain Project SGA3). This has been independent research without any interferences or undue influence from the funder.
Conflict of Interest
None declared.
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