Hostile environments? Down’s syndrome and genetic screening in contemporary culture

• Published in: Medical Humanities
• Main Author: Burke, Lucy
• Other Authors: Arts and Humanities Research Council
• Format: Article in Journal/Newspaper
• Language: English
• Published: BMJ 2021
• Subjects: Iceland
• Online Access: http://dx.doi.org/10.1136/medhum-2020-012066; https://syndication.highwire.org/content/doi/10.1136/medhum-2020-012066

This essay explores the complex entanglement of new reproductive technologies, genetics, health economics, rights-based discourses and ethical considerations of the value of human life with particular reference to representations of Down’s syndrome and the identification of trisomy 21. Prompted by the debates that have occurred in the wake of the adoption of non-invasive prenatal testing (NIPT), the essay considers the representation of Down’s syndrome and prenatal testing in bioethical discourse, feminist writings on reproductive autonomy and disability studies and in a work of popular fiction, Yrsa Sigurdardóttir’s Someone To Look Over Me (2013), a novel set in Iceland during the post-2008 financial crisis. It argues that the conjunction of neo-utilitarian and neoliberal and biomedical models produce a hostile environment in which the concrete particularities of disabled people’s lives and experiences are placed under erasure for a ‘genetic fiction’ that imagines the life of the ‘not yet born’ infant with Down’s syndrome as depleted, diminished and burdensome. With close reference to the depiction of Down’s syndrome and learning disability in the novel, my reading explores the ways in which the generic conventions of crime fiction intersect with ideas about economics, politics and learning disability, to mediate an exploration of human value and social justice that troubles dominant deficit-led constructions of disability.