New Genetics and Society

Prenatal screening and testing includes all forms of testing (of both the foetus and pregnant person) that occur during a pregnancy, both as part of standardised antenatal screening programmes, as well as targeted and diagnostic testing where known ‘risk’ factors exist.

Recent developments in the field of genomic medicine, together with the widespread availability of Non-Invasive Prenatal Testing (the analysis of cell-free fetal DNA from maternal blood), however, are increasingly challenging the overarching aims and remit of prenatal testing and screening. Shifts towards the use of broad assay approaches in reproductive genetics (e.g. whole genome/exome sequencing) mean that the sheer scale and complexity of information that can now be made available through prenatal testing and screening is rapidly expanding.

In addition to these shifts, the legislation surrounding pregnancy termination following prenatal testing has recently come under critical scrutiny. Heidi Crowter’s 2022 legal case, for example (which was launched to demand human rights and legal protections of disabled foetuses), highlighted oppositional tensions between women’s rights and those of disabled people. This framing- of an antagonistic relationship between women, as users of prenatal screening programmes, and disabled people, whose lives were seen to be disvalued through their existence- has shaped much of the ensuing public debate around the role of prenatal screening within inclusive societies.

This collection takes these timely, and still emerging, social and ethical tensions surrounding expansive prenatal screening and testing practices-and the needs and rights of both pregnant and disabled people therein- as its point of departure. By demonstrating the contested conceptual landscape on which prenatal screening programmes are premised- for example, in the construction of what constitutes ‘valuable’ or ‘actionable’ information in prenatal contexts, and to whom this information should be made available- this collection aims to illuminate the complexities of the policy and legal context in which prenatal screening and testing practices are situated, and the varied lived experiences to which they give rise.

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