NeuroGenE generates research projects that explore the ethical challenges in psychiatric genetics and genomics 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.
NeuroGenE adopts creative methodological strategies within a multi-stage process. Stage one involves thematic analyses, and systematic reviews; stage two: ethnography, participatory methodologies quantitative analysis and qualitative analysis; stage three: cultural and normative theorising; stage four: conceptual and ethical theorising, and finally: stage five results in ethically grounded and culturally sensitive guidance.
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 a positioning paper, case studies of emerging ethical issues in psychiatric genetics produced by the Africa Ethics Working Group, empirical research projects with local experts, and a systematic review:
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 have 6 case study papers they are working on, below is a list of the topics and lead author:
Informed consent and use of the UBACC tool – Dr. Camillia Kong
In-patient recruitment – Dr. Andrea Palk
Translation in the African context – Prof. Eunice Kamaara
Saliva collection and the African spiritual realm – Dr. Janet Nakigudde
Reviewing psychiatric genetic protocols – Prof. Telahun Teka
Formation of the AEWG – Dr. Dorcas Kamuya and Dr. Adamu Addissie
Members of the African Ethics Working Group are conducting empirical research projects on the ground, the topics and lead authors are:
Experiences of giving saliva – Dr. Janet Nakigudde
Rapid ethical assessment – Dr. Adamu Addissie
Understanding of biobanking – Dr. Violet Naanyu
Photography – Dr. Dorcas Kamuya
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.
More information will be provided soon.
If you would like to apply for funding, please contact us.