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

Authors: Shenaz Ahmed1*, Karl Atkin2, Jenny Hewison1 and Josephine Green3
Academic Unit of Psychiatry & Behavioural Sciences, University of Leeds, Leeds, UK 2Health Sciences, University of York, York, UK 3Mother & Infant Research Unit, University of York, York, UK

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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.