NeuroGenE generates research projects that explore the ethical challenges of diagnosis, prevention and interventions relating to psychiatric and neurodevelopmental disorders at the global level. Due to the structure of the initiative, and the interdisciplinary nature of our collaborations, our projects vary in form and methodology. The research projects at NeuroGenE will gradually establish an empirical and theoretical evidence base that will function as a vital resource for developing practical advice and policy recommendations.

Current and completed research projects within NeuroGenE include:

Kong, C., and Singh, I. (2018). The ethics of global psychiatric genomics: Multilayered challenges to integrating genomics in global mental health and disability—A position paper of the Oxford Global Initiative in Neuropsychiatric GenEthics (NeuroGenE). American Journal of Medical Genetics Part B: Neuropsychiatric Genetics.

Abstract: Psychiatric genomics has the potential to radically improve the prevention and early intervention of serious mental and neurodevelopmental disorders worldwide. However, little work has been done on the ethics of psychiatric genomics—an oversight that could result in poor local uptake, reduced practical/clinical application, and ethical violations in this rapidly developing area of scientific research. As part of the Global Project of the Stanley Center for Psychiatric Research, the Global Initiative in Neuropsychiatric GenEthics (NeuroGenE) based at the University of Oxford aims to embed ethical inquiry within scientific investigation and engage with fundamental ethical questions around a psychiatric genomics approach to mental and neurodevelopmental disorder. This position paper sets out the core aims of the NeuroGenE research programme and explores the importance of a crosscutting research orientation in this field based on multidisciplinary methodologies which can ensure that efforts to translate and apply global psychiatric genomics in public policy and clinical practice are ethically grounded strategies, respectful of different cultures and contexts.

The Africa Ethics Working Group work on case study papers, below completed and ongoing manuscripts with the topics and lead author:

Education vs Screening: A Case Study of the Use of Capacity to Consent Tools in Psychiatric Genomics – Camillia Kong, Mehret Efrem, Megan Campbell

Prioritising African perspectives in Psychiatric Genomics Ethics: issues of translation and informed consent –Eunice Kamaara, Megan Campbell, Dr. Camillia Kong

Investigating assumptions of vulnerability – A case study of the exclusion of psychiatric inpatients as participants in African genetics research – Andrea Palk, Mary Bitta, Eunice Kamaara & Dan Stein

Saliva collection and the African spiritual realm –Janet Nakigudde

Reviewing psychiatric genetic protocols – Telahun Teka

Formation of the AEWG – Dorcas Kamuya and Adamu Addissie

Members of the African Ethics Working Group are conducting empirical research projects on the ground, the topics and lead authors are:

Exploring views of lay members and providers on biobanking and use of stored biological materials in western Kenya: giving feedback and benefit sharing – Violet Naanyu

Exploring views of lay members and providers on biobanking and use of stored biological materials in western Kenya: beliefs and fears of use and storage of biological materials – Eunice Kamaara

Application of the Rapid Ethical Assessment (REA) in the NGap – Ethiopia – Adamu Addissie

Exploring the cultural perceptions of obtaining saliva from research participants in genetics research of severe mental illness – Janet Nakigudde

Participants’ Experiences of UBACC in Supporting their Decisions to Consent to Participate in NeuroPsychairtic Genomics Research in Western Kenya – Eunice Kaamra

Dr. Caesar Atuire (PI), University of Ghana, with Dr. Lily Kpobi and Ms. Kiran Manku are collaborating on this project, funded through the NeuroGenE small grant scheme.

This project aims to investigate if, and how, attitudes towards Psychosis in Ghana relate to the three main theoretical frameworks of reference shared by many Ghanaians: Western secularized values systems; traditional beliefs; and religious (Christian/Muslim) conceptions of human life. The flourishing of spiritual healing camps, and other alternative forms of mental health care, points to a conception of mental disorder as something beyond the physiological, or genomic. The study takes a mixed-methods approach, including an attitude survey of 350 participants from the general population, and semi-structured interviews with 60 persons who are either participants of, or belong to, the inner circles of persons with psychosis receiving a form of treatment. In addition to identifying the theoretical framework informing attitudes towards psychosis, the study also looks at the normative praxis that ensues from these frameworks. This project will conclude with a dissemination workshop and scientific publication.

Dr. Jayashree Dasgupta (PI) at Sangath, and Dr. Georgia Lockwood Estrin at Birkbeck University of London, are collaborating on this project, funded through the NeuroGenE small grant scheme.

This research project aims to capture parents’ understanding of cognitive impairment and cognitive enhancement in children in low and middle-income settings (LMICs). Improving cognitive function in children could have a significant impact on their functionality, wellbeing, and development potential, which in turn could lead to an improvement in quality of life for the individual and their family; this is particularly relevant in low-income settings, where developmental potential may be reduced due to poverty and its associated risk factors for poor cognitive outcomes. Despite this, there is limited research to-date into how parent’s perceive methods for cognitive enhancement and whether they would be acceptable to low-income families who may have little access to healthcare and information on these methodologies. This study, therefore, aims to reduce this knowledge gap, by conducting a qualitative study involving interviews with parents of children in Delhi. This research will inform future studies investigating cognitive enhancement interventions in LMICs and has the potential to inform the direction of global neuroscience research.

Ms. Kiran Manku is leading this research, which is currently ongoing.

This review aims to provide an overview of existing research on knowledge, attitudes and behaviour towards persons with neuropsychiatric disorders in the context of Sub-Saharan Africa. This includes psychiatric/mental health, neurodevelopmental, and neurological disorders.

Dr. Violet Naanyu (PI), Dr. Caesar Atuire and Florence Jaguga are collaborating on this project, funded through the NeuroGenE small grant scheme.

One of the best ways to get contextualized information on indigenous etiologies, treatment & localized responses to any illness is to engage local communities, providers, patients & families who have experienced illness. Using a participatory approach, this team hope to explore explanatory models (EMs) for psychosis in Nandi, Kenya. This study will be the first to explore all component parts of an (EM) for psychosis in Kenya. They include: 1) Explanation of origins of a condition; 2) Socio culturally prescribed treatment; 3) Meanings given to symptoms for every episode; 4) Explanations held by both patients & practitioners; 5) Reflections on the role played by specific cultures in EMs.

Prof Eunice Kamaara (PI), David Nderitu-Egerton, Sarah Wawa, and Tracy Magoma are collaborating on this project, funded through the NeuroGenE small grant scheme.

Youth identity develops during a transient developmental stage and includes the reasoning of existential reality in different contexts. In Kenya, indigenous African worldviews, historical socio-political and economic experiences, and contemporary or emerging global ideologies are among some of the critical factors contributing to youth identity. Emerging technologies could exacerbate mental health complications but also provide novel opportunities to address mental health. This project explores how personhood, identity, and contexts in Africa inform ethical considerations to guide the development and use of digital innovations addressing mental health needs of young people in Africa.

The Ethics for Mental Health Digital Innovation for Young People in Africa (EMDIYA) Network is a group of expert Academics, Advisors and Consultants, Industry partners, Early Career Researchers, and Young People all focused on developing a robust framework for responsible and relevant digital mental health interventions for young people in African countries. This project puts diverse groups of young people at the centre of digital innovations aimed at their mental health in the African context to identify their needs and preferences. EMDIYA facilitates the sharing of knowledge about responsible and relevant digital tools among young people, ethicists, service providers (technology companies, mental health practitioners), and policymakers (guidance and standard operating procedures).

Dr. Caesar Atuire (PI), Prof Ilina Singh and Kiran Manku are collaborating on this project funded by AfOx.

This project aims to support and empower families and caregivers in navigating pluralistic mental healthcare; and provide insight on local understandings of mental health. Through mapping, interviews, and focus groups, a multidisciplinary team will co-create outputs designed to have an impact across the academic, community, health service, and government sectors. Accessibility, belief systems, and individual demographics inform how individuals navigate mental health treatment options. In this follow-up project of the “Frameworks of attitudes towards mental health disorders in contemporary Ghana” study, we will develop a framework that supports the key decision-makers: families and caregivers. The primary outputs will be a peer support network and a roadmap that guides users in navigating the local mental healthcare options. The roadmap will be co-produced with healthcare providers and caregivers, to ensure that it is relevant and trustworthy.

Dr. Gabriela Pavarini, Prof Sheila Murta, Nico Ferrario, Gaston Gertner, and Lu Suárez Battán are collaborating on this project funded by the British Academy.

This project aims to advance understanding of youth agency in mental health and contribute to a sustainable and healthy future for Brazilian youth. Working in close collaboration with an advisory group of adolescents from the outset, the research team partners with the chatbot company “Talk2U”. The project involves two phases: i) to conduct a preliminary mapping of young people’s understandings and experiences of agency and responsibility in the context of mental health promotion; ii) to develop and test a digital tool – “storytelling chatbot” -aimed at assessing and strengthening young people’s agency and responsibility towards well-being promotion. It is believed that the project will redefine concepts of empowerment and agency from adolescents’ own perspectives, and engage young people in the design of innovative health promotion strategies. The research outcomes will contribute to the achievement of the sustainable development goal of ‘promoting well-being for all’.

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