Hypertrophic Cardiomyopathy Genetic Counseling

Genetic counseling is important if you are diagnosed with hypertrophic cardiomyopathy (HCM) as well as your family. A simple blood or saliva test can determine if you and your family are at risk of developing HCM. If you or your family members are at risk, monitoring of the heart -- even without symptoms -- is recommended: Early detection and diagnosis may help prevent, delay or lessen some HCM complications. However, genetic testing must first be performed in the person diagnosed with HCM in order to identify the mutation, prior to genetic testing of relatives.

Frequently asked questions

  • What is a genetic counselor?  A genetic counselor is a health professional with specialized training in medical genetics and counseling. OHSU’s genetic counselors have master's degrees in genetic counseling and/or medical genetics. They are certified through the American Board of Genetic Counseling. Like other health professionals, they must participate in continuing education to maintain their certification.
  • What can I expect at a genetic counseling appointment?  At the appointment, the genetic counselor will take a detailed family history focused on heart problems, provide information about hypertrophic cardiomyopathy (HCM) genetics, recurrence risks for family members, genetic testing and surveillance options, insurance concerns, possible test results and implications of the results for you and your family.  Genetic counselors also provide support and information on additional resources available to people and their families living with HCM.
  • How is a genetic test obtained?  After your genetic counseling appointment, if you decide to proceed with testing, you will be asked to go to the laboratory for a blood draw.  You can eat and drink normally prior to your appointment (no fasting is required). We will not obtain a blood sample for genetic testing prior to your genetic counseling appointment.
  • How can I obtain more information regarding genetic counseling?  If you would like to learn more about genetic counseling and genetic testing for HCM, you may schedule an appointment in our Hypertrophic Cardiomyopathy Clinic with one of our certified genetic counselors by calling 503-494-1775.We strongly encourage you to visit the website of the Hypertrophic Cardiomyopathy Association for further information about the genetics of hypertrophic cardiomyopathy. 

We hope this information is helpful. If you have further questions, we also recommend you talk to your primary cardiologist.