Screening for sickle cell and beta thalassaemia

Values and religious beliefs

In making decisions about screening and diagnosis, people call upon a range of personal, cultural, social and religious beliefs. The challenge for health professionals is to be sensitive to these beliefs and respect their role in decision-making, but without making assumptions about what people from particular cultural or religious backgrounds will decide. Certainly many people with strongly held religious beliefs may decline all screening on the grounds that every human life is sacred and they should not question God's will for them. Others may be willing to accept screening, and may also wish to consider diagnostic tests in pregnancy so that they can prepare for what they may face, even if they would not consider termination. In some cases, people we talked to described a sense of resignation to God's plan for them, or indeed a positive state of embracing the challenge God sends. Some felt God would not send them a burden they could not manage.

As this mother says, screening may also enable you to decide not to have children in the first place rather than face a termination or having an affected child. A Roman Catholic couple felt that pre-implantation genetic diagnosis (PGD) offered them an alternative which was compatible with their beliefs.

However, it is important not to assume that all people of faith will reject the possibility of termination. In the sections on 'Deciding to have diagnostic tests' and 'Messages to other parents' several people describe how they reconciled their faith and their views about termination. Some Muslim mothers in particular wanted others to know that termination may be permissible within Islam under certain conditions. Some Islamic scholars teach that termination for life-threatening conditions is permitted up to 120 days of pregnancy, at which point the soul enters the unborn baby ['ensoulment']. After that it is forbidden.

For those Christian parents who were willing to consider termination, it was more a question of weighing up Christian objections to termination against other factors that were important to them, especially not wanting their baby to suffer. 

Although this mother felt she had grown in faith since having a baby with sickle cell anaemia, another mother said the experience had challenged her faith. She said, 'Sometimes when you have problems, you just think, “Why did God choose you, for that to happen to you?”…You're praying to God all the time for good health and whatever and then something like that has happened to your child. Why? Why you?'

People of other faiths also described a process of balancing their concerns about the baby, their religious and moral values, and their own feelings as parents.

Equally, parents who have no particular religious conviction will hold a range of moral views about whether termination is acceptable, or whether they personally would want to consider it even if they defend others' right to choose that route.

A difficulty which faces some specialist counsellors working in this field is when the beliefs expressed by clients are at odds with scientific medical evidence. For example, parents may be concerned about how God will punish or reward certain actions. A young Christian mother who briefly considered an abortion for an unplanned pregnancy said one reason why she didn't do it in the end was because she was thinking 'If I have an abortion, probably God won't give me another child. So if I fell pregnant it means that he gave me this baby.' A Muslim mother was worried that having CVS had in some way caused her daughter's beta thalassaemia major, and that they should not have questioned the will of Allah. Another 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. 

Some counsellors have been troubled by cases where the belief that God can perform miracles has led some parents to believe a child born with a sickle cell disorder has been cured, so they have stopped giving medication, with potentially very serious results for the child. One Christian mother said this would not be a sensible action, whatever your religious conviction. Another was concerned to challenge the belief in some African communities that sickle cell is a curse rather than an inherited genetic condition.

Last reviewed September 2015.

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