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.
