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Early in 2016, I was invited to join the Lancet Commission on Global Mental Health and Sustainable Development to work on a report that followed up the seminal 2007 series of articles in the journal Lancet that launched the ﬁeld of global mental health. I was excited and honored. The Lancet reports are multi-authored and rigorously evidence-based; they also frequently contribute to shaping global health policy. At last, I thought, my discipline, neuroethics, would contribute analysis of substantive ethical challenges that arise when addressing mental health needs in a global context, such as the dignity and care of persons with mental and neurological disorders; equitable access to treatments; and the problem of stigma.
As it turned out, while the Commission wanted to address and tackle these concerns, my role would not just be to contribute ethical thinking. Rather, I was to represent the potential for neuroscience, and, more broadly, biological psychiatry, to help position mental health as a development priority in efforts to reduce the global burden of disease. The World Health Organization (WHO) had explicitly acknowledged mental health as a global development issue in a summit hosted jointly with the World Bank in 2016; in the WHO Comprehensive Mental Health Action Plan; and in the inclusion of mental health in the WHO High Level Commission on Non-Communicable Diseases.
The desire to integrate biological approaches to mental health and illness in the Commission represented an important progression from the original 2007 Lancet series. In working with Commission colleagues, I began to understand that a core challenge that lay before us could be construed as ethical: to confront the contention that a biomedical model of mental disorder is reductive and essentialist, and potentially harmful to interests of dignity and justice. I have argued for many years that such a hard-line critique of “the biomedical model” is not a useful or necessarily accurate account of scientiﬁc thinking. However, suspicions about biological approaches linger, particularly in the form of concerns about “medicalization” of mental health and overuse of biological treatments. Such concerns are especially resonant in low- and middle- income country (LMIC) contexts, where medicalization of mental health has been associated with studied indifference to culture and context. Promotion of dehumanizing, essentialist ideas about non-Western brains and minds and persons is part of a painful history of colonialism and oppression. So if the discoveries of biological psychiatry were to inform the Commission’s report, it would be important and right to acknowledge these critiques, while also evidencing the value of biological approaches to the high-level aims of the report: improving mental health at the population level and reducing the contribution of mental illness to the global burden of disease.
My working group included some of the world’s leading biological psychiatrists and neuroscientists, and we ultimately convinced fellow commission members to give biological dimensions of mental health more airtime in the ﬁnal report. The value of biological research was clearest when we could demonstrate identifying targets for effective interventions. Digital mental health, for example, is often positioned as a technology that could revolutionize global mental health—there are currently about 10,000 mental health “wellness” apps available for a broad range of conditions. But most of these apps do not leverage mechanistic understanding of underlying behaviors and cognitions, as, for example, reward processing deﬁcits in schizophrenia; or regulation of affective and cognitive pathways in depression.
Drawing on the Evidence
One thing that we did was to fundamentally change the trajectory of the Commission: we drew on emerging evidence from neuroscience and genomics to describe brain development as a function of convergent, multi-level factors: environmental, psychosocial, and biological. We relied heavily on research on the correlations between socio-economic status and its associated variables (such as malnutrition, lack of stimulation, and chronic stress), and early brain development. We also drew on brain plasticity research that depicted current knowledge about sensitive periods during childhood and adolescence. We wanted to stimulate further research in this area and help support arguments to health policymakers to develop early intervention and prevention strategies.
One overall message was, instead of supporting categorical claims about ultimate causes of mental disorder, or about the presence or absence of mental illness, genomic neuroscience research could be used to help illuminate the highly complex and dynamic pathways to mental health and in illness across the life course. Another important point was to emphasize some of the similarities between “Global North” and the “Global South” in relation to the political economy of mental health. These descriptive terms are used by the United Nations and World Bank to point to political and economic differences in LMIC countries (Global South) as compared to other countries (Global North). However, all countries are vulnerable, to some extent, to economic, political, and environmental conditions that contribute to health inequalities, such as conﬂict and displacement, urbanization, income inequalities, and climate change. Better understanding of the contributions of these “social determinants” in the pathophysiology of mental illness, and proportionate action to improve health inequalities, is therefore crucial to progress in all countries.
As part of the Lancet Commission, we explored the question: Should neuroscience ﬁnd its way into LMIC settings, in the context of global mental health? Our conclusion was “yes”; but in order to meet the ethical challenges of relevance and utility, neuroscience research needed to more clearly speak to challenges arising in LMIC contexts. I hope that in the future we will do better at demonstrating that relevance and utility.
The Next Steps: Ethical Considerations
Since the Commission, my own work with LMIC partners has expanded considerably, which has convinced me of the need to keep asking that should question to illuminate ethical concerns and ensure beneﬁts. Increasingly we have also focused on a secondary question: If biological research is to inform our understanding of human brain development and functioning in LMIC contexts, how should this happen?
The overwhelming majority of what we know about the human brain is derived from research on people of Anglo-European descent living in Western countries. If we agree that human brain development is a dynamic “eco-bio-developmental” process, as a highly cited recent model suggests, then this limited evidence base means that we likely have limited epidemiological understanding of patterns of risk and resilience in brain development.
Moreover, most of the brain research that has been done in LMICs was conducted by Western researchers. This reality raises a range of ethical considerations, including the relevance and accessibility of neuroscience knowledge and interventions in LMICs, and the need to build capacity among local researchers to participate in and to lead LMIC-based research projects.
Compounding these challenges is the fact that human biological research by Western researchers in LMICs has a long history of unethical behavior. For example, biological materials, such as saliva, blood, and tissue, derived from research on the African continent, have for centuries been transported to the West. Despite the transformations in Western research ethics following the 1979 UK Belmont Report, the ﬂow of such research materials still involves signiﬁcant risk of ethical violations, such as lack of valid consent, biological material transfer agreements, and beneﬁt sharing. As recently as last year, the UK Wellcome Sanger Center was accused of “bio-piracy” for allegedly planning to commercialize a gene chip that used DNA from indigenous African tribes. Groups like H3Africa (Human Heredity and Health in Africa) are a robust response to historic injustices, focused on African leadership and facilitation of sustainable research infrastructure and ethical guidelines.
This history and such LMIC responses as H3Africa have guided us in developing NeuroGenE, a global initiative in psychiatric ethics. The endeavor grew out of a partnership with the Stanley Center at the Broad Institute of Harvard University and MIT in a project called “Neuropsychiatric Genetics in African Populations” (NeuroGAP). Although all human beings are genetically very similar, African populations have the greatest genetic diversity in the world but are, for historical, practical, and cultural reasons, severely under-represented in genetic studies. The genetic architecture of psychiatric illnesses is highly complex and still not well understood; large-scale collections from African and other under-represented populations in genetic studies of neuropsychiatric disorders may accelerate genetic discovery and drive development of targeted therapeutics.
Led by principal investigator Karestan Koenen and a team of African co-researchers, NeuroGAP encompasses scientiﬁc research, local capacity building and training, and ethics. Each arm of the project works collaboratively to facilitate responsible, relevant, and meaningful outcomes. At the core of the project sits the Africa Ethics Working Group, made up of bioethicists and social scientists across the African sites in which NeuroGAP operates: South Africa, Kenya, Uganda, Ethiopia. As NeuroGenE has grown, we have been joined by researchers from Zimbabwe and Ghana.
With these colleagues, we are addressing challenges and opportunities for development of responsible and relevant neuropsychiatric and genetic research in LMIC contexts. Along with innumerable lessons learned thus far, Caesar Atuire, a philosopher at the University of Ghana, has inspired us to consider a metaphysical challenge to take African cosmology seriously. Consider these (ﬁctional) scenarios:
A woman who donated saliva, after consenting according to protocol, returns after a few days in some distress. She has consulted family and elders and realizes that part of her spirit resides in the saliva. She asks if she can have her saliva back. Even if researchers were to agree to the request, the sample has already been anonymised.
During the consenting process, a man asks to take the consent forms home, in order to consult his ancestors about his participation in research that requires donation of a biological sample. The research ethics protocol requires participants to give their consent on location.
If one accepts that what Atuire calls local “cosmological visions” are worthy not just of respect, but of equal explanatory status, then research ethics protocols need to consider these perspectives in anticipating the potential harms of research. This is a provocative proposal even for local committees in LMICs, since much of the practical ethics applied by those committees is based on Western philosophy. However, there is currently active discussion and debate about the development of an “African bioethics” that draws upon traditional philosophical frameworks. In my view, this debate should rightly and deeply scrutinize both the generalizability of our Western bioethical concepts, and the practices we researchers have constructed, albeit with good intentions, that impose Western interpretations of these concepts in LMIC research settings.
If that all seems to impossibly complicate how neuroscience and broader biological brain research is to be done in LMICs, let me offer another discovery from ongoing work: Local beliefs in these settings can and do co-exist with an acceptance of the biological underpinnings of mental health and illness. As scholars of cultural psychiatry have illustrated, people around the world access health systems in more or less traditional ways: There is a range rather than a dichotomy. Many of us live in global societies in which we reconcile contrasting belief systems; for example, by simultaneously pursuing Western and non-Western approaches to health, by visiting a Western medical clinic, an acupuncturist, and a meditation teacher for a chronic illness.
Recent research led by Atuire and public health researcher Violet Naanyu in Kenya aims to better understand help-seeking preferences for a set of cognitions and behaviors that, from a Western perspective, would be labelled “schizophrenia.” Preliminary analyses suggest that people would prefer to consult both a local healer or spiritual practitioner, and a doctor trained in biological psychiatry. Such research also helps to reveal the complexities of stigma associated with mental disorder and neurodevelopmental conditions.
Across Western and non-Western settings, a narrative of biological blame for such conditions can both reinforce stigma, particularly familial stigma;
or reduce it, particularly self-stigma. Whether the impact is positive or negative often depends on context, such that a person can have different stigma experiences in the course of their day. Consequently, one cannot assume the value of a biological account in efforts to defeat stigma; rather, one needs to work to understand stigma locally and enable appropriate mental health literacy.
The Role of the Community
A broader issue concerns community engagement and involvement in research on the human brain in LMICs. Researchers agree that community engagement is important for its practical beneﬁts, such as better recruitment, more compliance with protocols, and lower dropout rates. But there are additional important human rights beneﬁts. These derive from the long and troubled history, both in the Global North and Global South, of viewing people with mental illness, neurodevelopmental conditions, and neurological conditions as unworthy of rights, respect, and dignity normally accorded to human beings.
In recognition of this history, inﬂuential funders have called for “experts by experience” to be included in global research into human brain development and function. Ironically, about a decade ago, I struggled to get funding for a project on the experiences of moral agency and personal authenticity among young people taking stimulant medication for ADHD. That study, ultimately funded by the Wellcome Trust, was rejected multiple times due largely to concerns that these “experts by experience” were unreliable sources who were unable to form independent views. Subjective experience, particularly that of children, was deemed largely irrelevant to the progress of scientiﬁc understanding.
It is a good thing, then, that experts by experience are now in vogue. Still, the work of integrating this “expertise” into the scientiﬁc enterprise is difficult and needs to respond to signiﬁcant objections, even if this critique is now more muted. An effective response requires theoretical rigor: One must be able to say convincingly why this kind of expertise matters. It also demands methodological innovation and moral seriousness: the involvement of experts by experience and their communities cannot be simply a well-intentioned exercise in “vox pop” or an assertion of public preferences. Mere “voices” are too easily ignored or, worse, appropriated to promote particular research or health policy agendas.
Working with colleagues at University of Oxford and enlisting groups of young people as advisors and co-researchers, our approach has been to build capacity in young people to participate meaningfully in research and to get involved in research and health policy decision-making. To meet the requirements of methodological rigour, we draw on techniques for balanced arguments, perspective taking, deliberation, and decision-making. The advocacy work of young people in LMICs can have signiﬁcant impacts on mental health literacy and stigma in their communities and in the world, and we want to empower them to become such advocates. We hope it will help move more national resources into positive mental health policies.
A wonderful example of the power of young people is the Lancet Young Leaders for Global Mental Health, who created an award-winning social media campaign, #mymindourhumanity, to help disseminate the ﬁndings of the Lancet Commission Report on Global Mental Health. Since 2018, we have worked with and learned from these young leaders as they engage in dialogues about mental health experiences in their communities, foster research, and advocate for policy change on international stages with the leaders of the WHO, UNICEF, the World Bank, and other globally inﬂuential institutions.
It is worth noting that neuroscience has a signiﬁcant international presence through global brain projects in the European Union, the U.S., China, Japan, Korea, Australia, and Canada. Because I focused here on biological approaches in LMICs, I omitted any mention of these enormous international investments. One might argue that these investments are hardly relevant in LMIC contexts, given that their scale exceeds the gross domestic product of many such countries. But should a technology-driven neuroscience agenda be more engaged in LMICs? Should there be LMIC leadership of a global brain project?
The scale of investments in these projects highlights economic disparities in global brain research, and risks leaving LMIC scientists behind through gaps in knowledge, capacity, and technology. Even as global mental health grapples with legacy of the biological model, global human brain projects risk going down the same road. Richer countries might build human and technological infrastructure and pursue research goals that have relevance to and potential beneﬁts for those countries, but fail to address the basic, sizable neurological and mental health problems that arise as a consequence of the social determinants of health.
Recently, global uprisings around diversity and in inequality have shown us that a lack of diverse representation of human actors, interests, and experiences can result in blind spots. As noted by the National Institute of Neurological Disorders and Stroke and other institutions, in science such blind spots impact our evidence and hamper our ability to turn knowledge into meaningful interventions for a signiﬁcant subset of the global population. Thanks to leadership by Karen Rommelfanger (director of Emory University’s neuroethics program), working with a group of international colleagues, global human brain projects have embraced ethics as a core dimension of their work. This development, alongside active work to support neuroscience in the Global South by prominent organizations such as the International Brain Research Organization, presents a promising platform for LMIC interests to be included and heard.
In short, to answer the question of how biological research on human brain development and function should venture forth in LMICs: through intentional partnerships; with humility, abundant care, and respect for persons, history, and ethics; and with curiosity and an open mind.
This article first appeared in the Fall 2020 issue of our Cerebrum magazine. Click the cover for the full e-magazine.