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A Baby Named Louise: Medical Ethics, Informed Consent, and the Value of Disabled Infant Lives in the Summer of 1978

Lookup NU author(s): Dr Vicky LongORCiD

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Abstract

The article examines how attitudes towards disability and infancy shaped informed consent and medical ethics in late 1970s Britain. It focuses on a baby who shared her year, month of birth, and forename – Louise - with the first baby conceived through in vitro fertilisation. This Louise, born with spina bifida myelomeningocele, died within a month of birth from infection, dehydration, and starvation. The article reveals how progress treating spina bifida was deliberately reversed in the 1970s when some doctors and policy makers, viewing disability as a burden and babies as lacking personhood, argued that it was better for babies to die, than to survive with significant impairments. The new principle of involving parents in decision-making left many burdened with guilt for decisions largely taken by doctors, while a deliberately opaque government policy prevented doctors from being tried for manslaughter but left them exposed to public scrutiny and criminal investigation.

Publication metadata

Author(s): Long V

Publication type: Article

Publication status: Published

Journal: Social History of Medicine

Year: 2026

Volume: 39

Issue: 2

Pages: 418-439

Print publication date: 01/05/2026

Online publication date: 06/03/2026

Acceptance date: 02/04/2025

Date deposited: 02/04/2025

ISSN (print): 0951-631X

ISSN (electronic): 1477-4666

Publisher: Oxford University Press

URL: https://doi.org/10.1093/shm/hkaf033

DOI: 10.1093/shm/hkaf033

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