Genetic Counseling

• The units that carry inherited information (genes).
• The structures that carry genes (chromosomes).

Genetic counselors are specialists who are trained in understanding how birth defects or medical conditions run in families. Meeting with a genetic counselor will help you understand more about your health conditions, health conditions that run in your family, and health conditions that can be passed along to your children.

Who should have genetic counseling?

Genetic counseling is usually the first step a person takes when deciding whether to have genetic testing. Genetic counseling can help you understand the risks and benefits of genetic testing as well as what to expect if tests are done. Genetic counseling can also take place after genetic testing to help you understand the results.

People who have children, are pregnant, or want to become pregnant

• You have a child with a genetic or chromosomal condition.
• You are concerned about passing an inherited condition to your child.
• You have had two or more failed pregnancies (miscarriages) or stillbirths and you want to become pregnant again.
• You are pregnant and you are 35 years of age or older. This is when the risk of chromosomal changes increases.
• You are pregnant and at risk for having a child with a genetic or chromosomal condition.

People who have genetic conditions or want to know about their risk

• You have a condition that is genetic, chromosomal, or inherited.
• You want to know more about your risk for inherited conditions. These include:
  • Heart disease.
  • Cancer.
  • Blood disorders.
  • Mental illness.
• You want to know how lifestyle choices will affect a genetic risk that you have.
• You want to understand or respond to the results of genetic testing.
• You want to know more about your risk for conditions that are common among your family or ethnic group.

What are the benefits?

• Explain the diagnosis of a condition.
• Tell you about your risk of developing certain conditions, such as cancer.
• Help you understand patterns of conditions that may be inherited in your family.
• Help you find resources for coping with a diagnosis.
• Help you plan for your next steps. This may include referrals to specialists.

What are the risks?

• You may have anxiety or guilt if the results could have an impact on your pregnancy or children.
• The results can affect important decisions in your life, such as the decision to have a family.
• Genetic testing may identify a risk for conditions that have no cure or treatment, such as Alzheimer's disease.

Talk with your health care provider to understand the risks and benefits of genetic counseling so that you can make a decision that is right for you and your family.

What happens before the session?

• Find out if counseling and testing are covered under your health insurance plan.
• Make sure that you have all recommended screenings or tests.
• Gather your personal medical records.
• Bring information about your family's medical history.
• Write down any questions you may have.

What happens during the session?

• Your family and personal medical history.
• Possible patterns of inherited conditions in your family.
• Choices that you have for genetic testing, or the results of genetic tests that you have already done.
• Results of tests for any genetic conditions.
• The meaning of a diagnosis and options for next steps.
• Strategies for preventing, identifying, or managing genetic conditions.
• Resources for further information, support, or care.
• How you may share results with others in your family.

What can I expect after the session?

• You will receive a letter summarizing the information that you discussed with your genetic counselor.
• You may have genetic testing and a follow-up visit to review your results.
• Depending on the results of your genetic counseling, you may be referred to specialists or other resources for support and information.
• Keep all follow-up visits. Use these follow-up visits to get more information or support.

Questions to ask your health care provider

• How can I be referred for genetic counseling?
• How do I prepare for genetic counseling?
• What are the benefits of genetic counseling?
• Will my insurance cover genetic counseling?
• Are there any resources that can help me learn more?

Where to find more information

• National Society of Genetic Counselors: www.nsgc.org
• Centers for Disease Control and Prevention: www.cdc.gov/genomics

Summary

• Genetic counseling is a meeting with a health care professional who specializes in conditions that can be passed from parent to child (inherited). This specialist is called a genetic counselor.
• Genetic counseling is usually the first step a person takes when deciding whether to have genetic testing.
• Information that is obtained from genetic counseling is private and confidential.
• Genetic counseling can help you understand the risks and benefits of genetic testing as well as what to expect if tests are done.