Jackie Leach Scully, Professor of Social Ethics and Bioethics, and Executive Director, Policy, Ethics and Life Sciences Research Centre, Newcastle University, UK will ask how are the enormous recent advances in genomic knowledge and capabilities changing the meaning of the relationship between material embodiment and our sense of self? What does that mean for our understanding of embodiment that is disabled? And how might the growth of precision medicine influence our thinking about and attitudes towards disability, and disabled people, in the future?
As a form of genomic science, precision medicine holds out the promise of new classifications of bodily anomaly (including disease and disability) and new possibilities for intervention and normalization. Its advocates argue that it will lead to improvements in the efficacy, efficiency and economy of healthcare services provision. Beyond its practical impact, however, the transition to precision medicine is likely to transform the professional and public imaginaries of the body, the normal self, and disability. In this talk Jackie Leach Scully will refer to some of the critiques that disability studies and bioethics have long brought to the genomic project, and examine their relevance for a future of precision medicine. She will explore how genomic research and healthcare inform the cultural constructions of normality and disability, and ask how researchers might influence those constructions in ethically robust ways.