Communicating genetics issues

 

General strategies

  1. Sometimes people’s preconceived ideas about genetics and inheritance in their family are in fact
    misconceptions that may affect their understanding of genetic explanations.
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Assess understanding

  1. Ask about the individual’s understanding of their situation before providing information. Use their
    understanding as a starting point for the discussion, ie start with what the family knows or believes then
    introduce new concepts or correct misunderstandings.
  2. As you explain genetic concepts, check the individual’s understanding of what they have been told before
    continuing.
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Use strategies to aid recall and understanding

  1. Actively encourage questions.
  2. Write down key medical terms.
  3. Make use of simple diagrams and pictures where appropriate.
  4. Repeat and summarise important information.
  5. Improvement in an individual’s recall after receiving complex information can be assisted by:
  6. Writing down relevant information
  7. Sending the individual a summary letter as a follow-up
  8. Providing brochures and fact sheets
  9. The presence of a support person at the appointment
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Deliver genetic information in plain English

  1. Give clear, specific information. Try to provide information about one issue completely before talking about the next issue. For example, when talking about testing during pregnancy, completely address one type of test (eg Down syndrome screening) before talking about the next.
  2. Explain medical terms or genetic terms and avoid jargon. Many people are familiar with words such as genes and chromosomes but may not have a complete understanding of what they mean.
  3. Feedback from genetic support groups shows that language commonly used to describe genetics can sound offensive and/or judgemental to people who are not familiar with genetic concepts. Avoid using terms that may unintentionally convey negative messages.
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