Cancer can run in families. Genetic counseling plays an important role in understanding these inherited cancer conditions.
Genetic counseling helps people understand and adjust to the medical, emotional, and family-related aspects of genetic conditions. Most people attend one to three sessions.
Before the first session, an initial assessment is done based on available information and family history. The first session usually focuses on reviewing the information, assessing risk, and discussing emotional concerns.
Who needs genetic counseling: People with strong family histories of diseases that are known to be inherited are considered high-risk and should be referred to a genetics expert. A referral may also be made if there’s uncertainty about how a disease runs in the family, or if a patient is worried or confused about their risk.
Preparation: The referral should include the questions that need to be answered, a summary of the patient's medical and family history, and any test results. Patients should know that the purpose of the referral is to find out whether genetic testing would be useful.
Risk assessment: The first step in understanding inherited risk is collecting a family history. Patients should be encouraged to fill out family history forms, either on paper or online, before their first session. Tools are available online to help build a family tree. The family history should be clearly recorded in the patient’s medical records.
Support and advice: Genetic counseling also gives emotional support and provides information on ways to reduce risk. This can include early or frequent screening, lifestyle changes, or medical treatments or surgeries. The genetic counselor and primary doctor usually work together to plan long-term risk management for the patient and their family. The primary care doctor often handles follow-up.
Testing and results: There are separate resources that explain genetic terms, types of testing, personalized medicine, and what to do if unexpected results come from a genetic test.
Online tools to find a genetic counselor:
National Society of Genetic Counselors (NSGC): Has a tool to find counselors by location and specialty. (https://www.nsgc.org/page/find-a-genetic-counselor)
American College of Medical Genetics and Genomics (ACMG): Provides a searchable list of clinics offering genetic counseling. (https://clinics.acmg.net/)
National Cancer Institute (NCI): Offers a directory of counselors who specialize in cancer syndromes. (http://www.cancer.gov/about-cancer/causes-prevention/genetics/directory)
March of Dimes: Offers service information through its local chapters. (http://www.marchofdimes.org/contact-us.aspx)
Genomic Medicine Service (GMS) for Veterans: Started in 2008, this service offers genetic counseling through telehealth at many VA medical centers. It is designed for veterans who cannot attend in-person sessions.
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