Periodic Reporting for period 2 - NEUROEPIGENETHICS (Epigenetics, Experience and Responsibility: Implications for neurodevelopmental disorders)
Reporting period: 2020-07-01 to 2021-12-31
NEUROEPIGENETHICS investigates the ethical implications of epigenetics for neurodevelopmental conditions (autism, Tourette Syndrome, ADHD). We research how autistic persons, persons with Tourette Syndrome or ADHD, their families and the general public experience the interaction between their condition and their biological and social environment. We want to define moral responsibility in light of the emerging field of epigenetics in the area of neurodevelopmental conditions and for (child) psychiatric practice. We aim to develop a more nuanced understanding of these conditions allowing the benefits of the biological understanding without its stigmatic, stereotyping and essentializing drawbacks. We also aim to develop a more nuanced understanding of the lived experiences of people with complex communication needs, developing more opportunities in the context of inclusive education and society. In order to do so, in work package one, we investigate the relation of biological/neurological determinism and stigma and investigate how a more nuanced, dynamic understanding of psychopathology (Tourette’s, autism, ADHD) can avoid stigma. Stigma is probably the most common cause of QoL issues in psychopathology generally and in Tourette’s & autism specifically. In work package two, we investigate how to include the voice and experiences of non-verbal people in research. For example, how can we work with consent? What is voice, who is heard and who not and why? What is the importance of lived experience for research? What is the importance of imagination in thinking about disability in research (also clinical research)? What are the importance of Disability Studies and Disability Justice for clinical research and bioethics? This ties in with the global debate on Disability Justice and inclusive society. People with complex communication needs are still strongly stigmatized and isolated. In work package three, we investigate the concept and possibility of collective responsibility, and how this is related to a more developmental and dynamic view on psychopathology. In work package four, we will translate this to recommendations for psychiatric practice.
In work package one, we investigated the relationship between stigma, responsibility and concepts of biology using methods from experimental philosophy. In work package two, we have performed a theoretical exploration of the importance of disability studies for clinical research and practical exploration of a more accessible and inclusive society. We have explored theoretical, methodological and practical aspects of ‘voice’ and the development of methodologies on how to include people with complex communication needs in research. We are interviewing adolescents with autism, ADHD and Tourette. We have reflected on the possibility and implementation of collective responsibility in the context of epigenetics, drawing from anarchist theory and disability studies.
We have laid the basis for the field of experimental philosophy and medicine. At the end of the project, we will have described the theoretical framework of this field and have performed some empirical studies using this framework. We will also have explored the use of arts-based methods to include people with complex communication needs in research and will provide a framework for such inclusion. We will have investigated the concept of collective responsibility and epigenetics and have laid down the conditions of possibility for truly collective responsibility.