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The Promise of Reversibility in Neuroepigenetics Research on Traumatic Memories

Stephanie Lloyd, Pierre-Éric Lutz, Chani Bonventre

Cambridge University Press eBooks, 2024

Abstract

DOHaD and epigenetic research that investigates causal mechanisms and predictive biomarkers has often occurred in the absence of discussion of ethical, legal, and social implications or engagement with disability communities. These implications include 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. Here we focus on the autistic community as an example. We argue that there is a need to work with autistic people and their supporters to co-design studies that facilitate a better understanding of autism’s challenges and assets and to use this knowledge to assist these individuals and communities. We also stress the importance of autonomy and information provision in relation to autistic individuals’ engagement with epigenetics tests. We conclude by urging researchers planning DOHaD and epigenetics research to listen to and engage with disability communities when they say, ‘nothing about us without us’.

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