Disability in DOHaD and epigenetics: towards inclusive practice

Developmental Origins of Health and Disease (DOHaD) and epigenetic research that investigate causal mechanisms and predictive biomarkers have often occurred in the absence of discussion of ethical, legal, and social implications or engagement with disability communities. This has often led to maternal blaming, labelling, stigmatisation, and ableism. Considering the debate on different models of disability by disability activists and social scientists, this is a timely opportunity to optimise the design of epigenetic research into conditions labelled as disabilities. Research aims should address the needs of disability communities, acknowledge diversity, and move away from medical to social models of disability. Our chapter considers the implications of epigenetics research, as a mediator of DoHAD, for people with autism, an example of a condition some label a disability. We discuss how views on epigenetics and autism have changed over time, including how research can enhance the lived experience of autistic people through contributions to understanding how autism develops and how the strengths and needs of autistic people can best be identified and supported. We argue there is a need for researchers, including those with autism, to work with autistic people and their supporters to co-design studies promoting this understanding, centring autonomy and the provision of information to autistic individuals, including whether to engage with current and future epigenetic tests, particularly those available direct to consumers. In summary, we urge researchers planning such studies to first engage meaningfully and non-tokenistically with disability communities and continue to engage through to the writing and dissemination phases of their research