The Black Box
The Saviour Sibling Investigation
For more than twenty years, the United Kingdom’s fertility regulator has licensed the creation of ‘saviour siblings’ under a legal duty to put the ‘welfare of the child’ first. The public is told the principle is secure. The record shows the system cannot verify it.
The Human Fertilisation and Embryology Authority (HFEA) holds no long-term data on how donor siblings are faring. It does not publish a true end-to-end success rate from treatment to transplant. Its pivotal decisions were taken in a committee whose detailed reasoning is not on the public record.
This set of investigations maps how that happened. It tracks the principle that bent under pressure, the move to case-by-case approvals that resist audit, and the long period in which no follow-up was built for the children created under licence. The aim is not to trade slogans, but to test claims against evidence that can be checked.
The picture that emerges is a system with wide discretion and no memory. If the ‘welfare of the child’ is to be more than a heading, the files must be opened, the numbers published, and the outcomes followed.
How UK Saviour Sibling Policy Was Forged by Contradiction
In 2002, the UK’s fertility regulator refused one family a ‘saviour sibling’, setting a firm ethical principle. Two years later, it quietly reversed that principle for a near-identical case, creating the inconsistent foundation of today’s law.
The Black Box – How the HFEA Licenses ‘Saviour Sibling’ Cases
A small committee decides if families may try to create a ‘saviour sibling’. The law says child welfare comes first. The standards are unpublished. We open the black box and test whether a humane system can also be a transparent one.
The Missing Outcome Data for UK’s Saviour Siblings
For two decades, the UK's fertility regulator has approved 'saviour sibling' procedures without collecting any long-term data on the children's well-being or the treatment's true success rate. Our investigation reveals an evidence void at the system's core.