Accessing Genetic Services

Summary: Lists tools and websites to help find genetic professionals and provides patient talking points about referring to genetics.

By JAX Clinical Education | August 2025

Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates risk assessment, education, and counseling. In some cases, it includes the offer of genetic testing, decision-making support, and interpretation of results. Genetic counseling is best provided by specialists with knowledge and experience in clinical genetics, such as genetic counselors, physician geneticists, and advanced practice nurses trained in genetics. Qualified genetic professionals are board certified and/or state licensed.

Talking with Patients about Referral

The following points are important for you to convey for the patient to fully benefit from a genetic counseling appointment.

Reason for Referral

Explain the reason you are referring the patient to help to set expectations and increase the likelihood of follow-through.

• Reason for referral. Some common reasons include: follow-up on family history information, discussion of risk and preventative/screening measures, assessment of appropriateness for genetic testing, and discussion of benefits and risks of genetic testing.
• Possible benefits of seeing a genetic counselor. Some benefits include: determining if you are at increased risk, determining whether genetic testing is appropriate.
• Possible harms of not pursuing the referral. Some possible harms include: not knowing about certain disease screening or prevention services you might qualify for, anxiety or uncertainty of not knowing if you, your children, and other relatives are truly at risk or not.
• The expected outcome. Some outcomes include risk assessment, informed decision-making, genetic testing, and receiving a diagnosis.

What to Expect

Review what will be covered during an appointment, and how the patient can prepare.

• Components of a genetic counseling session. This may be a long appointment (30-60 minutes), and includes:
  • Detailed medical and family history
  • Risk assessment and risk counseling
  • Addressing psychosocial issues and emotional concerns
  • Directing an in-depth consent process for genetic testing, when applicable
  • Discussing insurance coverage and cost for genetic testing, if indicated
  • Disclosing results of genetic testing, when applicable
  • Determining and communicating screening and management plans
  • Summarizing and planning for follow up
• Know that genetic testing is always optional. The appointment may or may not include genetic testing, and if it is indicated, the genetic expert will discuss the benefits and risks of testing for supported decision-making.
• Be aware testing may be recommended for affected relatives first.
• Prepare for the appointment. It can be helpful for you to learn more about your family health history and to talk to affected family members about their interest and willingness to undergo genetic evaluation, in case that is recommended.

Logistics of Referral

• Provide names, roles and credentials of genetic professional(s) involved
• Discuss insurance coverage of genetic appointment
• Give directions and contact information
• Plan for follow-up after the consult

Finding a Genetic Professional

General Resources

Genetic counselors, clinical geneticists, and nurse specialists in genetics may be available at your institution or you may need to search elsewhere. You can find a genetic expert through:

• National Society of Genetic Counselors
• American Board of Medical Genetics and Genomics
• International Society of Nurses in Genetics

It can sometimes be challenging to find a genetic expert locally. There are opportunities available for telecounseling through academic institutions and private businesses. Often, insurance companies will pay for these services.

Learn More

Genomic Testing for the Healthy Individual (CME/CNE). Practice identifying patient motivations for genomic testing and assessing if a genomic test is a good fit.

Genomic Testing for Diagnosis (CME/CNE). Practice identifying patients who may benefit from genomic testing and communicating with patients, families, and genetic experts about testing.

Genetic Testing in Pediatric Neurology. Practice identifying when further value might be added by a molecular diagnosis and choosing the best genetic tests for the clinical context.

Hereditary Cancer Clinical Education (CME/CNE). Case-based modules that let you practice identifying and managing patients at risk for hereditary cancer.

Disclaimer

All information in this resource is provided for educational purposes only.

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