Screening for sickle cell and beta thalassaemia

Telling people you are a carrier: Implications for relationships & marriage

When people find out that they are carriers, and intend to have children, it has implications for current or future relationships. For people who discover they are a carrier during pregnancy and are already in a relationship, the first priority is usually to get their spouse or partner screened too (see 'Partner carrier screening'). 

However, many people we talked to would rather have known before choosing a partner and said they might not have got together if they had known they were both carriers. This was true for people from a range of different faith groups and cultural backgrounds.

In communities where arranged marriage is customary, telling people your son or daughter is a carrier may be a difficult thing to do. However, several people thought it was better to be open about being a carrier, and said they thought it was important that both potential partners in an arranged marriage should be screened. They wanted their children to know about their carrier status so they could make informed choices. 

Once the marriage has taken place, it would not be acceptable for the husband and wife to separate if they discovered at that stage they were both carriers. As one mother pointed out, it can also be difficult if a marriage has been formally agreed when the couple are still very young.

Some couples who discover after marriage they are both carriers might choose to have children anyway, and accept them as they are. Some might choose prenatal diagnosis and be willing to consider ending the pregnancy. Others might decide that it was best for them not to have any more children.

Although many people we spoke to were in favour of telling people before arranging a marriage, not everybody will choose to do so. One woman from an Indian Sikh background explained why she and her family did not tell her future husband's family she was a carrier. She feels it will be up to her children to make their own decisions when the time comes.

The question of finding out about carrier status before entering a relationship was equally important for many people in communities where it is customary to choose your own partner.

One woman, who is a sickle cell carrier, was glad she did not find out her husband carried haemoglobin C until after they were married, even though she had tried to avoid marrying a carrier.

Of course, it may be difficult to ask someone if they are a carrier at the start of a relationship, and people often become involved with each other before discovering that they are both carriers. 

A few people said they might change partner or would rather not have any more children with their current partner. One couple described re-considering their relationship while they were waiting for the amniocentesis results during their first pregnancy, because they both very much wanted to have children. The husband said, 'If that doesn't work out, then we just have to consider maybe changing partners or doing something else. So it was that serious.'

Other people felt they would stay with their partner but would have prenatal diagnosis and then decide whether they wanted to keep the baby. As one mother said, 'I know the different ways of finding out, you have a choice to keep the baby or not to, so it's not the end of the world. So I don't see it as a big deal at all.' 

Another mother felt if you were in love with someone you would marry them despite the risks.

One couple got married knowing they both carried beta thalassaemia. As Catholics they would never consider terminating a pregnancy, but they were hoping that with modern technology, especially pre-implantation genetic diagnosis, they could avoid conceiving a baby with the condition. (See 'Pre-implantation genetic diagnosis')

Other parents also wanted to make sure their children knew how important it was to tell future partners if they were a carrier.

Last reviewed December 2018.


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