Inherited heart disease is a complex condition that can affect the entire family. Early identification of an inherited cardiac disease with the help of genetic counseling can help your family members prevent complications and live longer.
Genetic counselors at the Penn Center for Inherited Cardiovascular Disease can help your family get the right genetic tests and understand the results to determine who might be at risk.
Genetic Counseling for Inherited Cardiovascular Disease: The Penn Medicine Advantage
When your family chooses to have genetic counseling at Penn you'll find:
- Family-based model of care: We want to help the entire family understand how inherited heart disease might affect them. Using pedigrees and advanced genetic testing, we can screen your parents, siblings and children. We will help you talk to your family members about their risk and can meet with them as well.
- A dedicated team of experts: Our physicians, nurses and counselors are specially trained in familial heart disease. We have a team of dedicated professionals with advanced degrees in genetic counseling. They spend extensive time explaining the condition to you and your family. Their knowledge and support help empower your family to take control of their health.
- Flexible, customized care: We make it as easy as possible to have genetic testing and counseling. Some families are spread out across the country or world, so we design our counseling to fit your preferences and needs. That may involve helping your family members find a specialized treatment center near them, individual or group counseling appointments in person or by video, and letters to inform relatives of results.
- Sensitivity to family circumstances: Every family handles genetic or family history information differently. Some relatives might be reluctant; some might be estranged. Our counselors have deep experience with many types of family dynamics. We handle each case with care and privacy, according to each person's beliefs and wishes. We can even coach you on how to talk to your family about the possibility of a genetic issue.
- Long-term follow-up: Our team will monitor multiple generations of your family over time, sometimes even decades. We get to know you and develop relationships, which helps us design personalized care plans and identify problems before they cause symptoms or complications.
- Help for future generations: If you're pregnant or planning to have children, we'll help you understand the role of inherited heart disease. We can assess the chances that you'll pass down a heart condition and order prenatal testing to make sure your baby's heart is healthy.
Genetic Testing and Counseling for Heart Disease: What to Expect
During an appointment for genetic counseling, we take the time to learn as much about you as we can and answer any questions, including when you should seek genetic testing for heart disease and how to assess your personal familial risk for heart disease.
At an initial appointment, we will:
- Discuss your detailed personal medical history, including any symptoms you're having
- Discuss your family's medical history, especially any heart conditions or sudden deaths in your immediate or extended family
- Create a family pedigree, which is a family tree or map of your close relatives
- Explain the uses, benefits and costs of genetic testing
- Recommend the specific types of genetic testing that are right for you
If you decide to proceed with genetic testing, the test can be performed in a lab or at home. If you prefer a lab test, a technician will take a sample of blood or saliva. If you choose to do the test at home, you'll receive a kit in the mail with instructions on how to take a saliva sample. You send the test back to the lab via mail with a prepaid sticker. Results are usually available in about a month.
Once results are available, a genetic counselor will follow up with you to talk about:
- The test results and what they mean
- What to do with the results
- Whether you'll need any other tests or appointments with cardiac specialists
- The chances of passing the condition down to future generations
- How to tell your family about a condition that might affect them too
- Any questions or concerns you might have
Depending on your circumstances and needs, genetic counseling may occur in person or via a telemedicine appointment. We can also speak with you one-on-one or in a group with your relatives. In cases where family members might be estranged, we can guide you through notifying them in writing.
Steps After Genetic Counseling for Inherited Heart Disease
Our genetic counselors are specially trained to listen to your story. We want to help you choose the path that is right for you, based on your beliefs, preferences and readiness.
We'll take time to help you fully understand complex genetic testing results so that you can make informed decisions about your inherited heart disease treatment.
Make an Appointment
Please call 800-789-7366 or request a callback.