Key Messages

  • Families from all communities can be affected by genetic disorders.
  • Marrying close blood relatives, such as cousins, is common in many parts of the world and is preferred among some families and communities in the UK.
  • In populations where people routinely marry close blood relatives, such as cousins, more children are born with recessive genetic disorders than in populations where people marry outside of the family.
  • Considering all types of birth disorders, around 5-6 babies out of 100 are affected in communities practising cousin marriage, compared to 2-3 out of 100 babies in communities marrying outside the family.
  • Most children born to blood related couples (e.g. cousin couples) are healthy.
  • Genetic disorders cluster in families. If a gene for a recessive disorder is present in a family – and this may be shown by an affected individual in the family or by an infant death - other family members may also carry this gene and those who marry within the family will be at higher risk of having a child with this disorder than those who marry outside the family.
  • Our knowledge about genetic disorders is improving all the time, and the information and tests available to families are increasing rapidly. 
  • Options are available to people whether they are already married or are considering their marriage choice. However, many people are not aware of the services available.
  • Genetic disorders affect all family members. It is important to share genetic information so that everyone can make informed decisions.  Individuals may need support to share this information. Referrals to the Genetics Service will help to ensure that information is cascaded to at risk family members.
  • People concerned about a genetic disorder within their immediate or extended family should speak to their GP, health visitor or midwife (if pregnant) who should make a referral to the Clinical Genetics Service based at Sheffield Children’s Hospital.
  • People can find out more about community opportunities to learn about these issues by talking to Saima Ahmed at Pakistan Advice & Community Association on 07450701628 or Parveen Ali on 07771393198. Saima and Parveen can speak to people in English, Punjabi or Urdu.