Screening for sickle cell and beta thalassaemia

Telling people you are a carrier: Implications for family

When people find out that they carry sickle cell or beta thalassaemia it does not just affect them as an individual. Because it runs in families, it has important implications for other family members, especially any brothers, sisters and cousins of childbearing age. 

Many people we talked to said they had told their own parents straight away, especially their mothers. People turned to their families for support and advice, but also to find out if their parents knew of any family history of the condition. Some people also wanted to let brothers, sisters and cousins know, so they could decide whether to have carrier screening themselves. 

One couple were both white, and both families were white as far back as they could remember. 

A few people were surprised to discover their parents knew there was a family history of the condition but had never told their own children, either because they did not want to talk about it or did not realise how important it could be. People who knew that their own children were carriers usually intended to make sure that they knew about it before they grew up. (See 'Telling people - Implications for relationships and marriage').

For many families the news came as a shock, and they needed reassurance and information about what it means to be a carrier. Some found it hard to believe that anyone in their family was affected. Other families did not see it as a particular problem. Levels of awareness of the conditions and how they are inherited vary from country to country and from family to family, and affect how families respond.

One Christian mother held a firm belief that medical science did not have all the answers and that through faith and prayer her baby would not be affected. 'The bible says what you ask from God you get… So I know I asked for a healthy baby and that's what I'm going to get.' (See Interview 05).

A couple where the wife comes from Thailand also had difficulties explaining Haemoglobin E to her family. She said, 'I tell them but they say they don't have it.' Her husband added, 'It's a completely different situation in Thailand, do you know what I mean? They haven't got the health care that we've got over here, full stop.' (Interview 27)

Although most people wanted family members to be aware that they might be at risk if they were planning future pregnancies, they also wanted to reassure them that being a carrier is not itself a threat to anyone's health. One couple did not feel it was urgent to tell their family, although they planned to at some point. 

How quickly people feel they ought to tell their family depends partly on whether other family members are at the stage of planning or having children of their own. 

Telling people about the actual diagnosis of sickle cell anaemia or beta thalassaemia major was another issue for some people. This is discussed in sections on 'Understanding the conditions' and 'Awareness and understanding about the conditions'.

Last reviewed September 2015.
Last update August 2010.

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