Survivorship

Genetic Counseling

Frequently Asked Questions

by Robin L. Bennett, MS, CGC, Senior Genetic Counselor, University of Washington Medical Center

After a diagnosis of cancer is made, it is normal to wonder if you are at risk to develop another cancer or if people in your family have an increased risk of developing cancer.  Overall, about 5 percent of cancer has a strong genetic component and therefore there can be a significant risk for other relatives to develop cancer. Persons with an inherited cancer condition may also be at risk to develop another primary cancer.

Knowing the medical history of your close relatives (siblings, parents, aunts and uncles, grandparents, and first cousins) can help to determine if your relatives have a higher risk for cancer. Clues in a medical family history suggestive of an inherited cancer genetic condition include:

  • Cancer diagnosed at a younger age than typical
    • Breast cancer before menopause (usually before age 50)
    • Colon cancer before age 50
    • Prostate Cancer < age 60
    • Uterine/Endometrial cancer
    • Childhood cancer
  • More than one primary cancer (such as colon and endometrial cancer, second primary breast cancer, kidney cancer in both kidneys, etc.), diagnosed at the same time or even after several years
  • Three relatives on the same side of the family with cancer (particularly if at a young age)
  • Cancer that is rare
  • Developing multiple colon polyps (usually 10 or more) or having relatives that develop multiple colon polyps

One way to keep track of your family's medical history is to draw a family tree.  There are many genealogy software programs that help you trace your family history. The Surgeon General has a free Web based tool that you can even share with your family to record your family medical history. There are also family history tools on the website of the National Society of Genetic Counselors.

Genetic counselors can assist you and your health professionals to determine if there is any genetic testing that might help assess your lifetime risk of developing cancer. There may be genetic blood tests or even tests that are done from tumor blocks that can be used to refine your  risk.. Genetic counseling and  genetic testing are covered benefits of many insurance plans. Usually the best person to have tested for a genetic link to cancer in a family is the relative who has had cancer at the youngest age, or who has had multiple primary cancers. If a gene change (mutation) is identified, then other relatives can benefit from genetic counseling and testing. However, even if no genetic testing is available, genetic counselors can often help provide recommendations for cancer screening and prevention.

Genetic counseling services are available through the Genetic Medicine Clinic at UWMC. A referral is usually required. To schedule an appointment, call 206-598-4030. Genetic counselors can also be identified through the "Find a Counselor" link on the National Society of Genetic Counselors Web site.

Frequently Asked Questions  

Q. What can happen when genetic test results are placed in medical records?

Clinical test results are normally included in a person's medical records. Consequently, individuals considering genetic testing must understand that their results might not be kept private.

Because a person's genetic information is considered health information, it is covered by the Privacy Rule of the Health Information Portability and Accountability Act (HIPAA) of 1996. The Privacy Rule requires that health care providers and others protect the privacy of health information, set boundaries on the use and release of health records, and empower individuals to control disclosure of their health-related information. Many states also have laws to protect the privacy and limit the release of genetic and other health information.

In 2008, the Genetic Information Nondiscrimination Act (GINA) became federal law. GINA prohibits discrimination based on genetic information in relation to health insurance and employment, but the law does not cover life insurance, disability insurance, and long-term care insurance. When applying for these types of insurance, people may be asked to sign forms that give an insurance company permission to access their medical records. The insurance company may take genetic test results into account when making decisions about coverage.

Some physicians keep genetic test results out of medical records. However, even if such results are not included in a person's medical records, information about a person's genetic profile can sometimes be gathered from that person's family medical history.

Source: National Cancer Institute Fact Sheet: BRCA1 and BRCA2: Cancer Risk and Genetic Testing