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Gynecologic Cancer Resource Guide
GENETIC COUNSELING

Discuss with your oncologist whether genetic counseling and testing is recommended.

  • The NCCN recommends genetic testing for ALL individuals who have been diagnosed with ovarian cancer.

  • Testing is also recommended when someone is diagnosed with endometrial cancer and may be ordered for some individuals who have been diagnosed with uterine cancer

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​Who are Genetic Counselors?
(Adopted by the National Society of Genetic Counselors, Inc. 1983)

​“Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling. Most enter the field from a variety of disciplines, including biology, genetics, nursing, psychology, public health, and social work. Genetic counselors work as members of a health care team, providing information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. They identify families at risk, investigate the problem present in the family, interpret information about the disorder, analyze inheritance patterns and risks of recurrence and review available options with the family. Genetic counselors also provide supportive counseling to families, serve as patient advocates and refer individuals and families to community or state support services. They serve as educators and resource people for other health care professionals and for the general public. Some counselors also work in administrative capacities. Many engage in research activities related to the field of medical genetics and genetic counseling.“

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https://www.nsgc.org/

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Genetic Counseling & Test Results
from National Cancer Institute (NCI)

“It is strongly recommended that a person who is considering genetic testing speak with a professional trained in genetics before deciding whether to be tested… Genetic counseling can help people consider the risks, benefits, and limitations of genetic testing in their particular situation. Sometimes the genetic professional finds that testing is not needed. Genetic counseling includes a detailed review of the individual’s personal and family medical history related to possible cancer risk.

 

Counseling also includes discussions about such issues as:

  • Whether genetic testing is appropriate, which specific test(s) might be used, and the technical accuracy of the test(s)

  • The medical implications of a positive or a negative test result (see below)

  • The possibility that a test result might not be informative—that is, that the information may not be useful in making health care decisions (see below)

  • The psychological risks and benefits of learning one’s genetic test results

  • The risk of passing a genetic mutation (if one is present in a parent) to children”

 

https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet


 

Will Insurance Cover My Genetic Testing and Genetic Counseling?

Under the Patient Protection and Affordable Care Act (ACA), most health insurers are required to pay for BRCA genetic counseling and testing for individuals who meet certain personal and/or family history criteria. If you meet the testing requirements, insurance companies must cover the entire cost of genetic counseling and BRCA testing with no out-of-pocket costs to you. 

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The ACA does not require coverage of genetic counseling and testing for people who do not meet the U.S. Preventive Services Task Force (USPSTF) guidelines, including:

  • Genetic counseling or testing for people with a family history that suggests Lynch Syndrome (associated with colon, uterine and ovarian cancer) or other hereditary cancer syndromes

  • Genetic testing for genes other than BRCA1 and BRCA2 (i.e., ATM, CHEK2, PALB2, etc.)

  • Genetic counseling and testing for men

 

Most private group and individual health insurers cover genetic testing for people who don't meet the USPSTF BRCA testing criteria but deductions and copays typically apply. 

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Note that the ACA does not apply to Medicare or Medicaid. They have their own rules.

Learn more here:

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Privacy Of Genetic Information
from National Cancer Institute (NCI)

“…People considering genetic testing must understand that their results may become known to other people or organizations that have legitimate, legal access to their medical records, such as their insurance company or employer, if their employer provides the patient’s health insurance as a benefit. However, legal protections are in place to prevent genetic discrimination, which would occur if insurance companies or employers were to treat people differently because they have a gene mutation that increases their risk of a disease such as cancer or because they have a strong family history of a disease such as cancer… In 2008, the Genetic Information Non-discrimination Act (GINA) became federal law for all U.S. residents. GINA prohibits discrimination based on genetic information in determining health insurance eligibility or rates and suitability for employment.” [Some individuals may not qualify for life insurance due to the results of their genetic testing. If this is important for you, you should get life insurance before testing.]


https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet

 

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The Genetic Information Nondiscrimination Act of 2008  (GINA)

GINA protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II).

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“...In 2008 the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination in the workplace and by health insurance issuers. In addition, there are other legal protections against genetic discrimination by employers, issuers of health insurance, and others.”  ~Courtesy: National Human Genome Research Institute

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https://www.genome.gov/10002077/

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www.ginahelp.org

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