Periodic Reporting for period 4 - NEUROEPIGENETHICS (Epigenetics, Experience and Responsibility: Implications for neurodevelopmental disorders)
Período documentado: 2023-07-01 hasta 2023-12-31
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, we ask what is the relation between biological theories of neurodevelopmental diversity and moral responsibility? Can biological/neurological research be aligned with a neurodiversity framework? Is there a relation between biological/neurological determinism and stigma? We investigate the relationship between biological/neurological determinism and stigma and investigate how a more nuanced, dynamic understanding of psychopathology (Tourette’s, autism, ADHD) can avoid stigma. We investigate how to include the voices and experiences of non-verbal people in research. For example, how can we work with consent? What is voice, who is heard and who is 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? We investigate the concept and possibility of collective responsibility in epigenetics and how this is related to a more developmental and dynamic view of psychopathology. We also investigate how this translates to clinical research and psychiatric practice and how the concept of developmental diversity can do some work there.
We have performed studies in experimental philosophy of medicine related to concepts of disease and to stigma. We have jumpstarted the field of experimental philosophy of medicine through an edited volume (with Bloomsbury) and as a special issue in Theoretical Medicine and Bioethics. We have performed several qualitative studies with autistic adolescents, parents of young autistic children, adolescents and adults with Tourette and adolescents with ADHD. We have performed a theoretical exploration about the importance of disability studies for clinical research. We have performed a theoretical (in article) and practical (with arts institutions) exploration of a more accessible and inclusive society. We have performed a theoretical, methodological and practical exploration of ‘voice’ and the development of methodologies on how to include people with complex communication needs in research. We have edited a special issue in the journal Developmental Medicine and Child Neurology to bring clinicians, researchers, philosophers and people with lived experience closer together. We have developed a new framework for thinking about collective responsibility in the context of epigenetics. We have championed the idea of developmental diversity as a way to bring the neurodiversity approach into biomedical research.
We demonstrated that the biological/neurological and neurodiversity accounts of developmental diversity are at odds with each other when viewed solely from a deterministic/reductionist perspective. Our research shows that combination is possible based on an epigenetic account in case of Tourette’s. Our work has also contributed to developing a conceptualisation of ‘neurodiversity-affirmative clinical care’. Applied to autism, we proposed reconceptualizing autism ‘diagnosis’ and ‘intervention’: depathologizing autism as such and readjusting interventions to target autistic-endorsed priorities. Second, we called for careful revision of ‘expert knowledge’ by including autistic experts by experience in clinical practice. Lastly, we proposed that clinical autism practitioners carefully, but explicitly embrace the political dimensions of their work and become active allies in the struggle for autistic emancipation.
This work led to a follow-up research project EPANEMA (Empowering Parents of Autistic Children through Neurodiversity-affirmative Psycho-education). In this project, we will co-develop and co-deliver an emancipatory psycho-education workshop series for parents of recently diagnosed autistic children, in close collaboration with the autistic community and neurodiversity proponents.
We also made methodological advancements. We jumpstarted the field of experimental philosophy of medicine by undertaking several studies ourselves on the topic of concepts of disease, collective responsibility and stigma, but also by editing an edited volume and special issue on that topic. We investigated different methodologies, including arts-based methods, to investigate the voices of neurodivergent persons in research, including those who do not use spoken words. We acquired extra funding for a PhD student to explore the potential of using video games to query the experiences of neurodivergent people.
The conceptual research conducted on epigenetics and (moral) responsibility ascriptions has led to significant contributions to the field. For example, we explored novel ways of thinking about collective responsibility in the context of epigenetics. Inspired by insights from authors in political philosophy more broadly, we suggested that epigenetic injustice can fruitfully be understood as an instance of historical-structural injustice that is best approached through a framework that leaves room for the ascription of forward-looking responsibility to various societal agents. We also acquired extra funding to focus on moral responsibility in the case of environmental pollution. Building on (neuro)epigenetics and ecological developmental biology we explore how there was ground to consider the environment to be a factor determining personal identity. We elaborated this idea from non-western perspectives, especially by studying how indigenous people in Ecuador (Kichwas) conceive of pollution and the relationship they have with their environment. Another result we consider particularly valuable is the publication of the edited volume Epigenetics and Responsibility: Ethical Perspectives. The collaborations of NeuroEpigenEthics researchers and others working on the ELSA (ethical, legal, and social aspects) of epigenetics ensured that our insights were informed by and informing the research of the broader research field. The PI of the grant also elaborated on her vision of autism in a monograph, Towards an Ethics of Autism, and on her vision of developmental bioethics more generally in a monograph, Chance Encounters. A Bioethics for a Damaged Planet.
This work led to a follow-up research project EPANEMA (Empowering Parents of Autistic Children through Neurodiversity-affirmative Psycho-education). In this project, we will co-develop and co-deliver an emancipatory psycho-education workshop series for parents of recently diagnosed autistic children, in close collaboration with the autistic community and neurodiversity proponents.
We also made methodological advancements. We jumpstarted the field of experimental philosophy of medicine by undertaking several studies ourselves on the topic of concepts of disease, collective responsibility and stigma, but also by editing an edited volume and special issue on that topic. We investigated different methodologies, including arts-based methods, to investigate the voices of neurodivergent persons in research, including those who do not use spoken words. We acquired extra funding for a PhD student to explore the potential of using video games to query the experiences of neurodivergent people.
The conceptual research conducted on epigenetics and (moral) responsibility ascriptions has led to significant contributions to the field. For example, we explored novel ways of thinking about collective responsibility in the context of epigenetics. Inspired by insights from authors in political philosophy more broadly, we suggested that epigenetic injustice can fruitfully be understood as an instance of historical-structural injustice that is best approached through a framework that leaves room for the ascription of forward-looking responsibility to various societal agents. We also acquired extra funding to focus on moral responsibility in the case of environmental pollution. Building on (neuro)epigenetics and ecological developmental biology we explore how there was ground to consider the environment to be a factor determining personal identity. We elaborated this idea from non-western perspectives, especially by studying how indigenous people in Ecuador (Kichwas) conceive of pollution and the relationship they have with their environment. Another result we consider particularly valuable is the publication of the edited volume Epigenetics and Responsibility: Ethical Perspectives. The collaborations of NeuroEpigenEthics researchers and others working on the ELSA (ethical, legal, and social aspects) of epigenetics ensured that our insights were informed by and informing the research of the broader research field. The PI of the grant also elaborated on her vision of autism in a monograph, Towards an Ethics of Autism, and on her vision of developmental bioethics more generally in a monograph, Chance Encounters. A Bioethics for a Damaged Planet.