Language considerations when talking
about genetics

 

  1. Studies with consumers with genetic conditions suggest that, for some people, certain commonly used genetic terms may have negative connotations if used without explanation or out of context. While correct medical or scientific terms are accurate, they may often be misunderstood.
  2. It is important when discussing genetic issues to reflect how the words chosen may impact on a patient’s perceptions and understanding and consider the potential to offend by using insensitive language. Other studies have shown that language can impact on patients’ understanding of genetic information.
  3. Similar terms may be used to describe quite different situations.
  4. eg ‘carrier’ can be used to describe a contagious person, such as with an HIV carrier
  5. This has led to the term ‘CF carrier’ to be interpreted as cystic fibrosis also being an infectious disease
  6. The list below provides examples of some terms that, if not explained, may have potentially negative connotations or be misunderstood.

 

Term
Possible alternatives
Genetic disease/genetic disorder
Genetic condition
Mental retardation
Intellectual disability
Bad or abnormal gene
Altered gene; changed gene
Mutation
Gene alteration; change in gene that affects its function; faulty gene
Sufferer, victim, afflicted with…
Affected by; living with
Normal/abnormal
Unaffected by/affected by
CF carrier/carrier of CF
Carrier for CF; carrier for the altered gene for CF; genetic carrier for CF
Wheelchair-bound or confined
Uses a wheelchair
An achondroplast, dwarf, midget
Person with achondroplasia
A ‘Downs’
Person with Down syndrome
Syndrome
Characteristic group of symptoms