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What is Genetic Counseling? Adapted from the National Society of Genetic Counselors
Genetic counseling is a process by which a health care provider:

  • educates individuals or families about genetic contributions to disease
  • interprets personal and family medical histories in order to assess risk of disease occurrence or recurrence
  • provides information about inheritance, testing, management, prevention, resources and research relevant to the risk or condition
  • promotes informed decision making and adaptation to the risk or condition

What is genetic testing?
Genetic testing is the laboratory examination of blood, saliva, other bodily fluid or tissue to identify indicators of predisposition to a particular condition, presence of a particular condition, or risk of passing on a particular condition.

What will happen at my genetic counseling appointment?
You can expect the initial visit with the genetic counselor to include:

  • collection and evaluation of your detailed personal and family health history
  • explanation of the features that reveal the presence of a hereditary predisposition to cancer, and of its potential health effects
  • preliminary assessment of the risk that a particular hereditary cancer predisposition is present in your family, and of your own risk of developing a related cancer
  • identification of other at-risk family members, if any
  • discussion of the benefits, risks and limitations of genetic testing, and of the issues that affect the decision to undergo or decline an appropriate, available genetic test
  • respect for the decisions you make regarding genetic testing
  • discussion of strategies for reducing or managing your risk, including cancer screening and preventive measures
  • referral to additional informational and supportive resources

How long will the appointment last?
Be prepared to spend approximately 90 minutes with the genetic counselor during the initial visit. Follow-up appointments generally take about 60 minutes.

What should I do to prepare for my first appointment?
Your personal and family medical history is key to understanding and managing hereditary predisposition to developing cancer. Before the appointment, you may want to review your own history and speak with relatives to gather information about health conditions in the family, including the ages at which family members were affected. Then you will be ready to share the information with the genetic counselor.

Is genetic counseling always followed by genetic testing?
No. The information gathered during genetic counseling will determine if testing is appropriate for a particular patient. Even if it is, it is always up to the patient to decide whether or not to proceed with testing. If the patient does proceed, test results will be disclosed and discussed at a follow-up appointment. The results may enable refinement of the preliminary risk assessments provided at the initial appointment.

How can I benefit from genetic counseling?
If it is determined that you are at increased risk of developing a certain cancer due to a hereditary predisposition, your health care providers can create a personalized plan for you with respect to cancer screening, prevention and risk reduction.
If it is determined that you are at no greater risk for developing cancer than are other individuals in the general population, you will be able to follow standard medical recommendations rather than taking additional actions recommended for high risk individuals.
The genetic counseling process also identifies other at-risk family members, allowing them an opportunity to seek additional information and appropriate health care.

Is genetic counseling only for people who have been diagnosed with cancer?
No. In fact, it is advantageous to undergo genetic counseling before cancer has developed. This allows you to take action to reduce the risk of cancer occurring in the first place.
For those already diagnosed with cancer, the information revealed through genetic counseling helps to guide their medical management decisions and minimize their risk of developing another cancer in the future.

Will my insurance cover genetic counseling?
Coverage varies among insurance providers. Before you incur charges for genetic counseling or testing, the genetic counselor and other NCH staff will assist you in determining whether or not your specific insurance plan covers these services.

Can my employer or my health insurance company discriminate against me based on information revealed through the genetic counseling process?
The federal Genetic Information Nondiscrimination Act (GINA) prohibits most employers from making employment decisions (hiring, firing, promotion, compensation, etc.) based on your genetic information.
GINA also prohibits health insurers from using your genetic information as a basis for a pre-existing condition or to determine health insurance premiums or coverage. However, GINA's provisions prohibiting discrimination in health coverage do not apply to life insurance, disability insurance, or long-term care insurance.
In addition, the federal Health Insurance Portability and Accountability Act (HIPAA) protects the privacy of your personal health record, including your genetic information.

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Last Updated 2013/02/15