Screening for sickle cell and beta thalassaemia

Reasons for deciding not to have diagnostic tests

If both parents discover they are carriers, there is a 1 in 4 chance their baby will have the condition. They can choose whether to have a diagnostic test to check if the baby is affected. No-one has to have these tests. It has to be a personal decision. See 'Deciding to have diagnostic tests' for the views of parents who decided they would like a test. 

However, some parents decide they would rather not know whether the baby has the condition before birth, especially if they feel strongly they would never terminate a pregnancy. One mother whose first baby was born with sickle cell anaemia explained why she did not want tests in her next pregnancy. (In her third pregnancy, when she moved to the UK, she was told she should have amniocentesis because of her age. She was wrongly made to feel it was compulsory).

Religious beliefs influenced many people in deciding not to have any further tests. 

A Muslim couple who already had a son with beta thalassaemia major were told their second baby could provide a donor match for their son to have a bone marrow transplant to cure him, but there was also a risk the second baby would have the condition. (See 'Living with beta thalassaemia major and intermedia). They decided to have no screening for the new baby, and the mother said:

“I didn't get pregnant to cure my son, I left everything in the hands of Allah. Whatever Allah is happy with, I am happy with.”

However, some people with religious beliefs did not feel this prevented them from considering prenatal tests and even possibly termination.

A Muslim family described religion as part of their thinking, but they were also influenced by their lack of trust in medical diagnosis and treatment. The mother had tests in her first pregnancy but regretted this and had no testing in any other pregnancies. She felt termination would be a sin, and is glad to have her daughter who has beta thalassaemia major.

Her sister-in-law explained that their lack of trust in medical services had been influenced by the experience of other family members, including one who had initially been diagnosed with beta thalassaemia major but has since seemed healthy. (Beta thalassaemia major, a severe and life-threatening anaemia, is the most common form of the condition, but there are other forms including beta thalassaemia intermedia, which may be milder but which are not always straightforward to diagnose. People with a very mild form may not need regular blood transfusions. See 'Living with beta thalassaemia major and intermedia' for more about the nature of the conditions). 

Attitudes to diagnostic tests in pregnancy do sometimes change in the light of experience. A number of parents who had tests in previous pregnancies but now had a child with the condition decided not to have tests in future pregnancies. Having experience of parenthood made some people feel differently.

A mother whose baby was diagnosed after birth with sickle cell disorder also decided not to have tests in her next pregnancy.

However, another mother decided not to have tests in her third pregnancy and was shocked when the baby was born with sickle cell anaemia. 

The question of how professionals inform and counsel people when they have to make decisions is discussed further in 'Advising people about their options.' See also 'Deciding to have diagnostic tests' and 'Values and religious beliefs'.

Last reviewed December 2018.


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