Screening for sickle cell and beta thalassaemia

Carrier screening for other reasons

Although most people we talked to had carrier screening during pregnancy, a few discovered they were carriers at other times in their lives. Some people found out after their new baby had been screened - their experiences are summarised separately in the section on newborn screening tests.

People sometimes want to be screened before they get married or start a family. This is often because they know there is a family history of being a carrier or having the condition, and know about the risks for the baby if both partners are carriers.

Some people from other countries were tested on entry to the UK, including women who were coming to the UK to get married or to join their husband after marrying in another country. 

Several people had known since childhood that they were carriers. Sometimes they had been tested because their parents knew it ran in their family. Others could not remember why they had been tested, and felt it was just something routine. This was particularly the case for people born in some African countries.

A few people had tests because they had felt unwell, especially if there was some family history of the condition. 

Although being a carrier doesn't mean you have the condition, people who are carriers of beta thalassaemia can sometimes become anaemic. One woman had several tests for anaemia before she was finally diagnosed as a beta thalassaemia carrier. Another was told her screening test results were negative, and it was only later she discovered she was in fact a sickle cell carrier.

A few people found out by chance when they were being treated for other conditions, but this is very unusual.

Last reviewed December 2018.
Last updated September 2015.


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