Find a Genetic Counselor

What is a genetic counselor?

A genetic counselor is a health professional who has a master's degree in medical genetics and counseling and is certified by the American Board of Genetic Counseling. A counselor can help you understand your risk for genetic disorders and equip you with the knowledge to make informed decisions about your family's health.

Who should see a genetic counselor?

You may want to consider genetic counseling if you are pregnant or planning a pregnancy and any of the following is true for you:

• You or your partner belong to an ethnic group with higher than average incidence of genetic disease
• Prenatal tests or carrier screening have yielded abnormal results
• You think one or more of your relatives may have a hereditary disorder
• You have had previous pregnancy losses or problems conceiving
• You have a child with a genetic disease

How do I find a genetic counselor?

To find a genetic counselor in your area, you can:

• Ask your doctor for a referral.
• Call the Genetic Disease Foundation at 212-659-6704
• Contact the National Society of Genetic Counselors

Is genetic counseling covered by insurance?

Plans vary, so it's a good idea to check with your insurance provider about your benefits before you make an appointment. Some insurance plans may require you to get a doctor's referral or select from a list of genetic counselors in their network. Others may allow you to choose your own counselor.

How should I prepare for my first appointment?

Your counselor will want to review your medical records before meeting with you, including the results of any prenatal tests you've already had.

To assess your risk for a genetic condition, your counselor will also need to know as much as possible about your family medical history. This is a good opportunity for you to start a conversation with your family about any health problems affecting your blood relatives, such as pregnancy losses, developmental delays, or birth defects.

How to collect a family history

What can I expect at a genetic counseling session?

Your initial visit will likely last 1-2 hours, during which your counselor will:

• Ask you extensive questions about your family medical history and draw a detailed family tree.
• Explain what tests are available if your family history suggests you might be at risk for a genetic disorder.
• Help you understand the benefits and limitations of particular tests.
• Arrange genetic testing if you choose to pursue it.
• Answer your questions about specific diseases.
• Tell you about recent advances in genetic research and treatment.

If you choose to undergo genetic testing, your counselor will meet with you to interpret your test results and discuss your options for further tests or preventive measures.

Many people find counseling extremely helpful in allaying their anxiety and confusion about hereditary disease. Genetic science is a complex and rapidly advancing field, but your genetic counselor has the expertise and experience to help you navigate it.

What a genetic counselor will not do

A genetic counselor will not tell you what to do. The counselor's role is to provide you as much information as possible so that you can make your own decisions about your family's health.

Your genetic counselor will be a source of support and reassurance but cannot provide psychological care. He or she may be able to refer you to a support group or mental health professional, if appropriate.

Your genetic counselor will not disclose information about you without your consent. Genetic counseling sessions are confidential.