zKey Points to Communicate to Parents/Family/Individual When Referring to Genetics

• The referral is made to evaluate whether a genetic cause may exist for the presenting features.
  • There will likely be a long wait before receiving an appointment.
  • Most insurance plans allow coverage of genetic evaluation services. Many insurance plans allow coverage of genetic testing.  Prior authorization for genetic testing is sought PRIOR to collecting a sample.
• If genetic testing is recommended,
  • Patient/family autonomy guides decisions to pursue genetic testing
  • Blood/saliva/buccal sample, likely will not be collected the day of the visit AND
  • Results can take 4-6 weeks to return AND
  • A genetic cause may not be identified, even though one may exist
• If genetic testing yields a diagnosis,
  • Prognostic, management, and recurrence risk information may or may not be available
  • Long term care and management is achieved through partnership with the PCP (medical home), other specialist(s), family, and geneticist

What to Expect When Your Child is Referred to a Genetics Appointment