What is a genetic counsellor?

Genetic counsellors are professionals who can help guide you through genetic tests and explain how the results might affect you or your family. They also provide you with emotional support and the resources to help you cope in the long term.

What can a genetic counsellor do for me?1–3

They will answer any questions you have about Duchenne muscular dystrophy (DMD) and what it means for your family.

They will help determine the best testing strategy for your child or relative.

They will help you make sense of the results and discuss the best course of action.

They will help you and your family cope with a positive test result.

Talking to a family member about genetic testing

Deciding whether to talk to your family members about a genetic diagnosis is a very personal decision. But you are not alone.

A genetic counsellor can help you:

  • Work out which family members could be affected by DMD1–3
  • Understand the benefits and drawbacks of telling your family about DMD2,3
  • Decide when and how to tell your family about DMD2,3
  • Prepare what to say and decide what information you should share2,3
  • Anticipate and prepare for any questions they might ask2,3
  • Deal with any difficult emotions2,3

Talk to a genetic counsellor. If you’re unsure about how to find one, ask your doctor for a referral

1. Helderman-van den Enden ATJM, et al. Clin Genet. 2011;79:236–242.
2. Institute of Medicine (US) Committee on Assessing Genetic Risks; Andrews LB, et al., editors. Assessing genetic risks: implications for health and social policy. Washington, DC: National Academies Press (US); 1994: 4. Issues in genetic counseling. Available at https://www.ncbi.nlm.nih.gov/books/NBK236049/ [last accessed March 2021].
3. Parent Project Muscular Dystrophy. Genetic counseling. Available at https://www.parentprojectmd.org/about-duchenne/is-it-duchenne/genetic-counseling/ [last accessed March 2021].

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