Genetic Counselling for Muslim Families of Pakistani and Bangladeshi Origin in Britain

Abstract

Establishing a patient's ethnicity, family history of genetic disease and family history of parental consanguinity is relevant for ascertaining risk in genetic counselling. In the United Kingdom, rates of congenital anomaly are highest among Pakistani children. Fewer congenital anomalies have been reported among British Bangladeshi children. Parental consanguinity is a risk factor for congenital anomaly. In ascertaining consanguinity, genetic counsellors need to avoid stigmatising Pakistani and Bangladeshi patients on the basis of any presumed or actual consanguinity. The focus should be on establishing risk, explaining the pattern of inheritance of an identified genetic condition and offering strategies for risk management. In the case of autosomal recessive conditions, it is important to clarify the difference between being a carrier of a recessive condition and being affected by that condition. Patients' prior understandings of illness causality and modes inheritance, their religious beliefs, language use and aspects of their family structure can also influence their access and responses to genetic counselling. These factors are not static markers of Bangladeshi or Pakistani ethnicity but vary within and between families, across generations and from one case to another. Genetic counsellors need to be aware of the range of ideas that patients may bring to a genetics consultation without presuming that any particular set of ideas will apply in any given case.

Key Concepts

  • Parental consanguinity elevates the risk of autosomal recessive conditions.
  • When ascertaining consanguinity, clinicians should avoid giving an undue negative emphasis to cousin marriages.
  • Some patients' understandings of genetic inheritance may depart from Mendelian principles.
  • Eliciting patients' understandings of the causes of genetic illness and mechanisms of inheritance is important for effective genetic counselling.
  • Patients may not know that autosomal recessive conditions are caused by inheriting a mutation in the same gene from both parents – the mother and the father.
  • Patients may not appreciate the importance of establishing carrier status for managing risk for known autosomal recessive conditions in the family.
  • Gender, status and position within their family can influence a patient's access to and interpretation of genetic risk information.
  • Some Islamic rulings permit termination of pregnancy for an abnormal fetus in the first 120 days of conception.
  • The relevance of Islamic opinions in reproductive decisions varies between individuals, depends on circumstances and can change over time.

Keywords: autosomal recessive inheritance; British Bangladeshi Muslim families; British Pakistani Muslim families; consanguinity; genetic counselling; genetic risk; Islam and reproductive decisions; lay understandings of genetics and inheritance

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Shaw A (2013) Rituals of infant death: defining life and Islamic personhood. Bioethics. DOI: 10.1111bio.12047.

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How to Cite close
Shaw, Alison(Aug 2016) Genetic Counselling for Muslim Families of Pakistani and Bangladeshi Origin in Britain. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005938.pub3]