Written by: Dr Hayley Tomes
Allowing the study of neuroscience to go ahead without the companionship of studies in neuroethics is like allowing a city to expand without consulting town planners. It will leave many people with problems of traffic congestion or great distances to essential services. The city is still a city but a far less effective one. Both research and city building are more easily steered in the right direction than trying to correct problems later on.
The study of mental illness demands that researchers speak to communities in ways that they can understand and that are respectful in that cultural context. This requires competence, humility and an understanding of the contextual and local factors. So says a newly published article in Nature Human Behaviour by Matshabane et al (2022).
It can be strongly argued that mental illness contributes greatly to the global burden of disease, in agreement with the World Health Organisation. However, its scholarship is based almost entirely on belief systems and frameworks from the Global North. There are important demographic, geographic and economic differences between these countries and those found in Africa. Specifically there are socio-economic, belief and ethnolinguistic systems that influence mental health in a culturally specific way.
In order to effectively study mental health, researchers need to become culturally competent, engage their cultural humility and respectfully involve local community members as partners in the research. This will promote appropriate practices in mental health and neuroethics research in Africa, two disciplines that have needed to collaborate.
One critical learning in order to pursue ethical research is the understanding that various cultures define personhood differently. This is particularly true of many cultures in sub-Saharan Africa where a person is often defined in connection to their family, community, and ancestors, God, or clan deities. Based on this understanding, an ‘African-communitarianism’ approach may be desirable when engaging local community members and when evaluating the likely success of interventions. A mental health diagnosis thus may have more weight to it as although it is given to the individual, it could affect all these connections. Researchers must be cognisant of this.
Fifty percent or more of Africans first consult a traditional or spiritual healer for mental health concerns. The importance of metaphysical forces with respect to illness in African populations is important to note, especially when developing therapies. Researchers need to engage with an individual’s multi-modal health-seeking process in a respectful way, while simultaneously providing accurate information and guidance in relation to innovative neuroscientific advancements.
Cultural humility involves recognising that most mental health interventions are conceived in English and there are often no direct translations for the terms used. Finding culturally appropriate ways of explaining interventions is critical to becoming culturally competent and to the uptake of the mental health interventions themselves. This also applies heavily to informed consent. Involving community members in designing and conducting studies would help alleviate language barriers.
A major goal should be to develop trust of scientists and medical science as a whole so that interventions designed to assist people are more likely to be accepted. This is important within the context of being aware that some neuroscientific technologies may have the potential to influence perceptions of personhood. Further still, the fact that what is ethically acceptable and necessary, will vary within different communities needs to be respected. Trust should be fostered in the area of data governance as people are made aware of the benefits and potential risks of data sharing.
There is certainly ample promising research being conducted in Africa, for example at this very institute, but it needs neuroethics support. The paper calls for a consortium for neuroethics in Africa to support African neuroscience endeavours. A consortium would provide a platform for a multidisciplinary range of stakeholders to come together and provide innovative strategies for research in Africa.
Funding is required, not only for a consortium but also to train mental health researchers in cultural competence and cultural humility. Currently, training programs for neuroethics do not exist in Africa. Addressing this gap will build the local capacity in neuroethics for the steadily growing number of African neuroscientists, who will then be equipped to make unique and valuable contributions globally.
Neuroscientific discipline aside, we should be asking questions such as “how could culture come into play in this research design, or the way in which people with this condition perceive their mental illness?” the paper posits. A learned cultural humility will help us to meet people where they are and to consider the benefits of alternative ways of doing things. A bi-directional learning situation where researchers learn from people, as well as the other way around, would foster cultural competence and create opportunities for deep learning and ultimately build better research. Only then does the ‘city’ of neuroscience become the best, most effective version of itself.
Find the article here