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Frequently asked questions about genetic counseling

What is genetic counseling?

Genetic counseling is a service that helps people understand:

  • How certain conditions are inherited (passed through a family from one generation to the next).
  • How your family health history can change your chance of inheriting a medical condition.
  • What genetic testing is available and appropriate for you or a family member.
  • What your genetic test results could mean to you, your children and other family members.

Who are genetic counselors?

Genetic counselors are healthcare professionals who have expertise in medical genetics and counseling, and who specialize in communicating complex genetic concepts in a way that is easily understood by patients and families.

Genetic counselors have completed a master’s of science program in genetic counseling or medical genetics, are board certified by the American Board of Genetic Counseling and/or the American College of Medical Genetics, and may be required to be licensed by the state in which they practice. In Indiana, genetic counselors are required by law to be licensed by the Indiana Professional Licensing Agency.

Why is cardiovascular genetics important?

Cardiovascular genetics is VERY important. Up to 15% of heart disease is hereditary (meaning that the risk for heart conditions is passed through families from one generation to the next).

Having at least one genetic risk factor for a cardiovascular disease impacts your entire family, not just you! Family members who could be at risk of having the same genetic risk factor(s) include your children, brothers, sisters, parents, grandparents, aunts, uncles, cousins and more distant relatives. Your family members could have a 50%, or 1 in 2, chance to inherit some of these genetic risk factors!

Why might a person be referred for cardiovascular genetic counseling?

There are two main reasons why someone might be referred for cardiovascular genetic counseling:

  1. That person has been diagnosed with a cardiovascular condition that can be inherited (passed through families from one generation to the next).
  2. The person’s doctor may have noticed at least one “red flag” of inherited cardiovascular conditions in that person’s medical and/or family health histories.

What are some of the most common inherited cardiovascular conditions?

There are several different types of inherited cardiovascular conditions, but the two most common categories are:

  • Cardiomyopathies (CAR-dee-o-my-OP-ah-thees)—These are conditions where the heart muscle becomes stiff, dilated, or enlarged.
  • Arrhythmias (a-RITH-mee-ahs)—Any condition where a person’s heartbeat (or heart rhythm) is abnormal. More about arrhythmia >>

It is very important to understand that not every person with a cardiomyopathy or an arrhythmia has an inherited condition! These conditions can also be acquired (meaning that they develop as a result of a separate condition). Cardiomyopathies and arrhythmias may be acquired due to certain drugs or medications, damage to the heart muscle (from a heart attack, infection, valvular disease, etc.), or other conditions (such as severe hypertension). If you have questions about your health history or your family history, talk with your doctor!

What are the “red flags” of inherited cardiovascular conditions that doctors look for in a person’s family?

The most common “red flags” of inherited cardiovascular conditions include:

  • A history of sudden death, including unexplained accidental death (such as someone who drowned or was in a single-car accident).
  • Heart disease or congestive heart failure at an early age (< 50 years old).
  • Two or more close relatives (on the same side of the family, meaning you are related to each of these relatives through your mother or your father) with a cardiovascular condition.
  • A personal or family history of fainting or passing out.
  • Multiple family members with diabetes, stroke, hypertension (high blood pressure), and/or high cholesterol.

Again, it’s important to know that not every family with one or more of these “red flags” has an inherited cardiovascular condition. If you are concerned about your family history, talk with your primary care provider.

When should I talk to my primary care provider about a referral to the Community Health Network Cardiovascular Genetic Center of Excellence?

You should talk with your primary care provider in these situations:

  • If your family has at least one of the “red flags” of inherited cardiovascular conditions listed above.
  • If a close relative (parent, child, brother/sister, aunt/uncle) has already been diagnosed with an inherited cardiovascular condition.
  • Anytime you have questions about your family’s cardiovascular health history!

What happens during a genetic counseling appointment?

You will meet with a geneticist (physician who specializes in genetics) and/or a genetic counselor. During your visit, the geneticist or genetic counselor will:

  • Review your family history and your personal health history.
  • Discuss any cardiovascular conditions that have been diagnosed in your family.
  • Evaluate your personal risk of having an inherited cardiovascular condition (if one has been diagnosed in your family).
  • Discuss genetic testing, including what test(s) is/are available, the benefits and limitations of genetic testing, what your health insurance might cover, and what out-of-pocket cost you can expect.
  • Answer any and all questions you have.

After your genetic counseling appointment, the geneticist or genetic counselor will send you a letter that summarizes everything you discussed during your visit.

Who can I call if I have questions about my personal health history or my family’s health history?

Please call Community Health Network’s Genetics Department Hotline at 317-621-8988. Select option 2 for cardiovascular genetics or option 4 for general genetics questions.

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