The NeuroGenE research programme examines the ethical challenges to the scientific research, and clinical and public policy application, of psychiatric genetics and genomics research with two key challenges at the forefront:
- How can novel interventions relating to psychiatric and neurodevelopmental disorders help to improve the treatment of and reduce stigma for persons facing psychiatric and neurodevelopmental challenges, their families and their carers?
- How can research on diagnosis, prevention, and interventions relating to psychiatric and neurodevelopmental disorders best respect and benefit stakeholders; including local communities, practitioners, and scientific infrastructures?
The research programme is structured along three related levels:
- Pragmatic inquiry (ethics research around the scientific investigation of diagnosis, prevention, and interventions such as psychiatric genetic and genomic data);
- Substantive inquiry (ethical questions around the conceptual grounding, cultural translation, and normative implications of developments and interventions relating to psychiatric and neurodevelopmental disorders within the global setting);
- Policy and/or practice application (the exploration of an ethically grounded approach to diagnosis, prevention, and interventions relating to psychiatric and neurodevelopmental disorders as it should inform the national and international public, as well as local community mental health practices).
Rather than rely on the debates and concerns of one single research orientation, NeuroGenE adopts a cross-cutting approach which brings into dialogue different fields of inquiry. This approach enables investigation of major ethical faultlines within the research and application of diagnosis, prevention, and interventions relating to psychiatric and neurodevelopmental disorders. Six thematic research themes have been identified:
This research theme identifies gaps in global psychiatric genetic and genomic data and expertise, whilst exploring the ethics of sharing knowledge, skills, and data within global collaboration and through research protocols. Research methods include an ethnography investigating power dynamics among researchers and collaboration, critical analysis on the effectiveness of collaboration and thematic analysis of successful collaborations. This project will propose guidelines for ethical capacity building and positive research collaboration.
This research theme explores the ethics of participant recruitment, tensions between inclusive equal participation and safeguarding within informed consent / assent procedures, as well as complex issues around capacity in the context of mental and neurodevelopmental disorder, as well as cultural and social meanings of consent. Methodologies include ethnographic and qualitative research with recruiters, scientific researchers, research participants, and family members, as well as philosophical work around the development of culturally-specific concepts of informed consent.
This research theme explores the ethical challenges of translating psychiatric genetic and genomic research in three critical areas: research participation and the role of local languages and knowledge. Local level translations of the scientific content regarding psychiatric genetics and genomics research will be explored through collaboration with local professionals and translators. Through the use of qualitative methods and participatory methodologies, in conjunction with emancipatory frameworks involving key stakeholders (include local practitioners, individuals affected by mental and neurodevelopmental disorders, family members, and local advocacy groups) this research theme will explore (i) local knowledge systems, beliefs, and cultural meanings around mental health practices; (ii) the portability of a psychiatric genetic and genomic approach to mental health. Case studies will be developed and a comparative analysis of this data will indicate relevant points of converging and diverging interests between different country sites.
This research theme probes the possible role of psychiatric genetics and genomics in combating stigma by first identifying the current stigmatising views towards persons with a mental disorder and the sources of such beliefs, and second, critically examining the possible danger of genetic essentialism around race in the context of psychiatric genetics and genomics. Methodologies include local level research and thematic analysis which identifies existing stigmatising views towards persons with a metal disorder, whilst qualitative research involving individuals with mental disorder and their family probes the lived experience of stigma. These methods will enable us to understand the origin of such views and generate effective mechanisms in which to overcome stigma to be proposed.
This research theme critically analyses issues of human rights, distributive justice and fairness within the context of the research and application of psychiatric genetics and genomics in global mental health, both from empirical and normative perspectives. This work stream helps build an empirical picture of different cultural settings, contrasting the expectations of participants in through local research, with the perspective of mental health service providers with limited resources in low-income countries. Such data will guide the normative examination of the ethical concepts, obligations, and principles (around distributive justice, equity, and human rights) underlying global psychiatric genetics and genomics research agenda and application. A range of methods will be used, including analysis of census data, cost-benefit analyses, as well as qualitative interviews and philosophical analysis.
The potential impact of psychiatric genetics and genomics on notions of identity, neurodiversity, and personhood are explored. Future application of psychiatric genetics and genomics focuses on prevention and early intervention of mental and neurodevelopmental disorders, a view that a disability rights ethos could find deeply problematic. Through the use of qualitative methods, participatory and emancipatory frameworks involving local and regional disabled persons, organisations, and philosophical analysis, this research theme clarifies the points of potential agreement and disagreement and illuminates the ethical impact of notions of genetic and genomic personhood and identity, particularly on groups already highly stigmatized due to the intersecting nexus of mental disorder, disability, and race.