A certified genetic counselor is someone who has studied and trained in both genetics and counseling. The role of a genetic counselor is multifaceted and involves educating individuals and families about rare diseases, including their causes and potential symptoms.
In general, a certified genetic counselor has a master’s degree from an accredited training program. They will also have passed the national exam from the American Board of Genetic Counseling.
The roles of a certified genetic counselor
- Educator – informing patients about the types, causes, and symptoms of rare diseases. They also educate patients and families about the different types of inheritance patterns for genetic syndromes, and how a child may be at greater risk for a rare disease based on the genetic health of their parents. They are also able to educate families about the different types of genetic screening and testing available. They can explain each testing process, what it entails, and what its results might show.
- Counselor-certified genetic counselors provide emotional support for rare disease patients and their families. They can help families navigate what may be a long, complicated, and stressful process. Undergoing genetic screening and testing, facing an increased risk of a rare disease, or a confirmed rare disease diagnosis is difficult. Expert emotional support and counseling are critical throughout the entirety of the process.
- Co-ordinator – as medical experts, certified genetic counselors can help coordinate the different medical teams and care options for rare disease patients. They can translate medical jargon and explain the options for both the short- and long-term management of a rare disease and its symptoms.
How to find a certified genetic counselor
Finding a certified genetic counselor can sometimes be difficult. This may be because of where an individual lives, or due to a lack of availability in their area. Genetic counseling services are in high demand, as awareness about genetic screening increases and people are more aware of their genetic testing and analysis options.
This has led to the development of virtual genetic counseling services. The goal of these services is to make it easier, and faster, for genetic counselors and rare disease patients to connect. They also aim to connect families to a global network of rare disease experts and counselors. This in turn reduces waiting times and improves accessibility.
Finding the right genetic counselor is important. It is advisable to use a genetic counseling service that connects patients only to certified genetic counselors.
