Ancestry - ethnicity and cultural issues

 

  1. Cultural background and ethnicity can influence people’s understanding and response to genetic conditions and risk. It is important to be aware of stereotypes and always attempt to individualise communication. Options discussed should not be limited or based on choices anticipated due to ethnicity, culture or religion.
  2. Genetic conditions are considered stigmatising in some cultures and familiarisation with some common
    cultural beliefs can assist in counselling. Ethnic agencies can help with this, and useful information regarding cultural beliefs, multilingual education material and services is available online (see Further information).
  3. Cultural beliefs can influence perceptions of kinship as not all follow the Anglo-Celtic concept of bilateral
    descent. The beliefs can also influence perception of cause of conditions in the family whch may negate
    understanding or acceptance of the concept of genetics. Acknowledging rather than dismissing those beliefs is important.
  4. Whenever possible, medically trained interpreters should be used to avoid burdening family members with translating medical information and the risk of misunderstanding or selective disclosure. Generally, people that have been in an English speaking country for less than two years will require an interpreter; however, language skills can be affected by distress and emotional situations. An interpreting service may be helpful.
  5. Interpreters have been made available via telephone by an Australian Government initiative. The Translating and Interpreting Service can be reached 24 hours a day, 7 days a week by telephoning 131 450
  6. Be aware that certain conditions, which are rare in some populations, may be more prevalent in others
    (see Contacts, support and testing and Rare conditions below).
  7. Cultural background can influence a person’s concept of family, kinship, patterns of descent and
    relationships to other people. As well, certain mutations are more common in particular populations.
    For example, mutations causing cystic fibrosis in Ashkenazi Jews differ from those found in people with
    Northern European ancestry.
  8. Ask separately about blood relatives on both sides of the family.
  9. Recognise the possibility of consanguinity that, whilst more common in certain cultural groups, occurs in
    all populations.
  10. Ways of asking questions regarding the family and their health include:
  11. ‘How many pregnancies did (name of relative) have?’
  12. ‘How many children do they have?’ (Asking for pregnancy failure)
  13. ‘How many [for example] brothers and sisters do you have altogether?’ ‘Have any died?’
  14. ‘How is their health?’
  15. ‘Did anyone attend an education support unit/centre whilst at school?’
  16. ‘Are there any conditions you are worried about?’
  17. Pedigrees should be dated and then updated regularly.
  18. The accuracy of a medical family history that a patient provides will be dependent on both the patient’s
    recollection and the condition. For example, breast cancer amongst families is often more accurately
    reported than colorectal cancer.
  19. You may wish to give your patient a family history questionnaire so that more accurate information can be gathered.
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