Genetic testing has now become an important part of management and diagnosis in inherited heart conditions. Precision medicine is continuing to offer the promise of individualized management for every patient based on the specifics of their condition. The Johns Hopkins Center for Inherited Heart Diseases can provide you with the appropriate counseling on the options, benefits, and potential risks of genetic tests. Genetic counseling is critical for understanding how genetic information may impact your future health, as well as your family. It is also recommended by most cardiac professional societies.
Our genetic counselors are trained to carefully identify this information and guide you in making a decision about how to use this knowledge, if necessary.
The goal of our Center is to find the cause of an inherited heart condition, and to target treatments that are specific for these problems. We also provide counseling to family members, and we work with other members of the cardiology community to better understand inherited forms of cardiovascular disease.
Center for Inherited Heart DiseasesWhat to Expect During Your First Visit
When you first come to the Center for Inherited Heart Disease, we will discuss your family’s medical history and you will meet with a genetic counselor and cardiologist. You may be required to take several tests which include:
- Cardiac MRI
After counseling and testing, your cardiologist and genetic counselor will share their findings with you and provide recommendations for any follow-up care.
Meet Our Genetic Counselors
Brittney Murray, M.S., C.G.C.
Emily Brown, M.G.C., C.G.C.
Rebecca McClellan, M.G.C., C.G.C.
Our team is available for consultations during normal business hours, but clinic availability will depend on the practitioners deemed most appropriate for your care. Most of the practitioners have clinic availability only on specific days.
We believe that a genetic counselor is a key member of the multidisciplinary team caring for patients with inherited heart disease. We also feel (as is recommended by professional cardiology guidelines) that generic counseling is necessary whenever performing genetic testing to make sure that the patient understands the benefits, limitations, and outcomes of genetic testing. Genetic testing is not a mandatory part of the visit and you and your genetic counselor may decide together that genetic testing is not something you want to pursue at this time. However, if you do elect to proceed, genetic testing in many cases can be sent at the time of your genetic counseling visit.
Unless you are specifically instructed, genetic testing does not require fasting.
There may be many different treatments available based on the specifics of your medical condition and genetic basis. This will be discussed with you and your cardiologist during your visit.
Health insurance typically pays for genetic counseling and genetic testing when it is recommended by a doctor. However, it is important to check with your insurance company to verify coverage. Insurance companies have different policies and may cover some tests and not others. Some cover genetic counseling and testing under specific circumstances, or insist that certain requirements are met before the agree to cover it. As with most health care provider appointments and tests, you may need to pay for some of the costs. Our cooridnator will work with you to make sure that your appointments are billable to your insurance.
For many instances, you may not need a referral. Our coordinator will let you know if your insurance requires a referral.
Your visit to the Center for Inherited Heart Diseases is part of your clincal care, but our team is often involved in medical research to advance the understanding of these rare conditions as well. If you are eligible for any specific ongoing research studies they will be presented to you during your visit and you will be given the option to volunteer or participate. Please feel free to call us to discuss specific research opportunities if you are interested.