What to expect from heart disease genetic counseling

Discovering you have a genetic heart condition — such as hypertrophic cardiomyopathy, Marfan syndrome or another inherited condition — often leads to a wide spectrum of emotions: fear of dying, confusion about the diagnosis and worries about family members inheriting the condition.

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Genetic counseling helps individuals work through these emotions and prepares them for genetic testing to confirm a genetic component is involved in their diagnosis. Counselors discuss how the testing might impact patients and their families and help them gain a better understanding of their family health history.

What to expect

During a genetic counseling session, which typically lasts 30 to 60 minutes, an individual meets with a genetic counselor. Counselors are health care professionals with specialized graduate degrees and experience in medical genetics. They are part of the health care team, providing risk assessment, education and support to individuals and families at risk for, or diagnosed with, an inherited condition.

During genetic counseling, the patient will:

• Explore his or her family health history
• Talk about decisions that may need to be made
• Learn which tests are available and decide whether testing is something he or she wants to pursue
• Discuss insurance coverage

"It's important to understand the pros and cons of genetic testing for the individual as well as for the family," says Michigan Medicine certified genetic counselor Rajani Aatre, M.S., M.Sc. Aatre works with patients at the Frankel Cardiovascular Center and specializes in inherited cardiovascular conditions.

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"Genetic testing is often not straightforward or may reveal other unexpected information," Aatre says. "It's very important to be aware of all the issues prior to undergoing testing."

For example, how do patients use the test results for medical management and intervention with other family members, especially when it involves their children?

Know your family history

Having as much information about your family history as possible in advance of your appointment is also important, says Aatre.

"The more information you can share, the better."

This includes as much health information as possible about yourself and relatives, including parents, siblings and their families, cousins, grandparents, great-grandparents, etc., and whether any of these family members have had genetic testing.

If relatives have died, you'll be asked to share circumstances of their death, including how they died and information about any untimely deaths.

Knowing your ethnic background is also important, says Aatre, because certain ethnicities are at greater risk for some genetic conditions.

Genetic testing, which may be done the same day following genetic counseling if the individual chooses, involves taking a blood sample that is sent to one of five or six labs in the country specializing in inherited cardiovascular testing.  

"Most insurance companies cover genetic testing," Aatre says, "but genetic counseling may not be covered. This can be verified prior to the appointment." 

According to Aatre, "If you choose to see a genetic counselor, you can expect help in understanding what tests are available and what those tests may show, as well as guidance to help you decide whether testing is something you'd like to pursue."

For more information or to make an appointment for genetic counseling or testing at the Frankel Cardiovascular Center, call 888-287-1082.