Work

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

Year: 2025

Type: article

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.

Source: Social History of Medicine

DOI: 10.1093/shm/hkaf033

Author: Vicky Long

Institution: Newcastle University

Language: English

Topic: Ethics and bioethics in healthcare

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,864