Genetic testing involves analysing your child’s DNA to identify specific genetic mutations associated with hearing conditions. It can help diagnose the cause of hearing loss, predict the risk of future hearing issues, and guide treatment options. However, the decision about whether or not to have genetic testing should not be rushed. Genetic testing can provide valuable insights, but it’s important to weigh the benefits and risks and consider your family values before deciding. Remember, it is okay not to test!
Genetic counselling is a crucial step in this process, helping you understand the implications and make an informed decision for your child and family. Counsellors can also give advice about what the test results mean. Keep in mind, having a particular gene mutation does not mean you will know the severity of the condition.
It would be helpful to consider the following when making your decision:
- Learn about your child’s specific hearing condition and its potential impact on their development and quality of life.
- Seek guidance from a paediatrician, ENT, audiologist, and genetic counsellor to understand the options available for your child’s condition.
- Review the benefits and risks of genetic testing – see below.
- Talk to your family and understand their point of view – they may not want to know the results.
- Engage in genetic counselling to understand the implications of genetic testing, interpret results, and discuss emotional, social, and ethical aspects.
- Take into account the information provided, your child’s needs and your family’s values.
Benefits of genetic testing:
- Increased knowledge
- Enable personalised treatment and management
- Risk prediction so can plan for potential interventions
- Family planning
- Research opportunities – participation in genetic studies can contribute to advancements
Disadvantages of genetic testing:
- Emotional impact – results may reveal unexpected or challenging information
- May negatively impact other family members
- Privacy and insurance implications
- Limited predictive value – not all genetic causes of hearing loss may be identified, and not all identified mutations lead to hearing loss.
Download the Real Life Tips infographic.
More information:
- How should decision aids be used during counseling help patients who are genetically risk | Journal of Ethics
- Causes of deafness genetics | NDCS UK
- 2101 CCCH CHAMP guidelines | Newborn Hearing Screening
- Register of Genetic Counsellors | Human Genetics Society of Australasia
- Life insurance products and genetic testing in Australia | NSW Govt
- The genetics of deafness an update for parents – webinar with Dr Karen Liddle
