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 birth 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 born with a disorder in communities practising cousin marriage, compared to 2-3 out of 100 babies in communities marrying outside the family. The extra risk is due to a higher risk of recessive genetic disorders.
  • Overall, most children born to 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 individuals and families are increasing rapidly.
  • Options are available to people whether they are already married or are considering their choice of partner and planning a family.
  • Genetic disorders affect all family members. It is important to share genetic information so that everyone can make informed decisions.
  • If you are concerned about a genetic disorder within your immediate or extended family speak to your GP, health visitor or midwife (if pregnant) and ask for a referral to the Clinical Genetics Service based at Sheffield Children's Hospital.
  • You can find out more about the services of the Genetics Service, by talking to Noshee Zameer, Genetics Outreach Worker on 07774828184. Noshee can speak to you in English, Punjabi or Urdu (اردو ).
  • You can find out 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 you in English, Punjabi or Urdu (اردو ).