The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major

OBJECTIVES: Religion is believed to have a significant impact on individuals from minority ethnic groups when making decisions about prenatal genetic screening, prenatal diagnosis and termination of pregnancy. This study aimed to explore the views of individuals from South-Asian and African-Caribbean communities towards termination of pregnancy for sickle cell disorders and thalassaemia major and the influence of (1) faith and religion, (2) perceived severity of the conditions, and (3) religious and community leaders. METHODS: The study explored the views of (1) individuals from four faith communities (Pakistani Muslims, Indian Hindus, Indian Sikhs, African-Caribbean Christians), using eight focus groups, and (2) parents of children with sickle cell disorders and thalassaemia major, using two focus groups and three interviews. RESULTS: Participants' accounts suggest that they generally considered religion and faith as an important factor in the decision-making process, but the perceived severity of the condition would play a more important role. Religious and community leaders were believed to have little role to play in the decision-making process. CONCLUSION: The findings emphasise the importance of recognising diversity within different faith groups and moving away from stereotypical views based on people's ethnicity or religion, and to consider the beliefs and preferences of individuals.