About Genetic Counselors

Frequently Asked Questions by Prospective Students

What Is Genetic Counseling?

Genetic counseling is a process to evaluate and understand a family's risk of an inherited medical condition.  A genetic counselor is a healthcare professional with specialized training in medical genetics and counseling.

For more information on genetic counseling please see the following FAQs found elsewhere on the NSGC website for more information about what genetic counseling is and who genetic counselors are.

Where Do Genetic Counselors Work?

Genetic counselors work in hospitals, doctor's offices, genetic testing laboratories, research studies, public health, insurance companies, and many other areas of health care.  Individuals and families are referred for genetic counseling to evaluate their personal and family history and to understand their chance for being that they, or their relative, may be diagnosed with or develop a medical condition.

Genetic counselors working in clinical settings, such as hospitals or doctor's offices, see people in a variety of different areas including prenatal, pediatrics, adult/general, cancer, and a number of specialty areas including metabolism, cardiology, and neurology. 

Who Goes to See a Genetic Counselor and Why?

Prenatal Setting

Women/couples who are pregnant or planning to become pregnant may see a prenatal genetic counselor for reasons including:

  • Personal or family history of a known or suspected condition
  • Abnormal ultrasound findings
  • Discussion of testing options and types of tests available during pregnancy
  • Discussion of positive and negative test results
  • Advanced maternal or paternal age, as the chances for chromosome abnormalities such as Down syndrome or single gene disorders such as Achondroplasia increase with parental age
  • Exposures during pregnancy which may cause birth defects

Pediatric Setting

Genetics counseling is appropriate for children with:

  • Developmental delay
  • Autism spectrum disorders
  • Multiple health problems or birth defects
  • Abnormal physical features
  • Family history of a genetic condition
  • Suspicion of a genetic condition

Establishing an underlying genetic cause for these problems can provide information on what to expect in the future, prognosis of the condition, the chance of having additional children/family members affected with the condition, and access to support groups and services.

Adult Setting

Individuals with a personal/family history or symptoms of an adult-onset genetic condition may benefit from genetic counseling to learn about:

  • The risk that they or their children may be diagnosed with/develop an adult-onset condition
  • Genetic testing options available for diagnosis or predictive testing

Cancer Setting

Cancer genetic counseling can help an individual determine whether or not they have inherited an increased risk for cancer.  People who see a genetic counselor include individuals with a personal or family history of:

  • Cancer, such as breast or colon cancer, under the age of 50
  • Two or more first-degree relatives on the same side of their family who have been diagnosed with cancer
  • More than one primary cancer in the same individual (such as two primary breast cancers, or primary colon cancer and primary stomach cancer)
  • More than one type of cancer in the same individual
  • A rare type of cancer or tumor pathology
  • A known genetic mutation in a cancer susceptibility gene in their family
  • An ethnicity associated with a higher frequency of hereditary cancer syndromes (e.g. Ashkenazi or Eastern European Jewish descent)

What Does a Genetic Counselor Do?

Genetic counselors have many responsibilities and perform a wide variety of tasks:

Seeing patients

Most genetic counselors work in a clinical setting, whether it be prenatal, cancer, pediatric or other area. These genetic counselors spend a large part of their day meeting with their patients.

  • Family history: We take a full family history in every session. We ask about significant medical diagnoses, individuals with intellectual disabilities, autism, birth defects or genetic diseases. Often times, these discussions will lead to more questions about ages, physical features and other symptoms
  • Reason for referral: Patients are referred to genetics for a wide variety of reasons. Some of these include a strong family history of cancer, a pregnancy with an ultrasound abnormality, a family history of a genetic disease, or abnormal blood testing in a pregnancy. Individuals are also referred to genetics to determine if they have a genetic disease. Before any genetic testing is ordered or a physical exam is performed by a physician, genetic counselors offer detailed explanations about the specific issue, the tests that are available, and the inheritance patterns
  • Decision making: Genetic testing is often a very personal decision that carries many emotional consequences. Often we are in a position to help individuals decide what level of information is right for them. In other situations, individuals must make decisions regarding their medical and/or pregnancy care as a result of genetic testing, and the choices can be difficult to navigate
  • Emotional support: Genetic counselors don't just provide information - another very important part of our day is providing emotional support to individuals and families during what can be a challenging and confusing time. Genetic counseling is one of the few medical professions that includes extensive training both in the science and the psychosocial impact of healthcare on our patient community.

Phone calls

Genetic counselors spend a lot of time on the phone. Who do we talk to?

  • Patients: We notify patients of test results. We follow up to gather more information. Wen contact patients to see how they are coping with difficult information. Patients call us to follow up with results, to ask additional questions, and to provide additional information about the family history or condition.
  • Laboratories: We communicate often with laboratories. We call labs to find out what tests they offer and what type of sample is required. They help us help patients with billing and insurance questions. We often call to check the status of laboratory results or add on additional testing.
  • Insurance companies: Genetic testing can be very expensive. We speak with insurance companies on behalf of our patients to determine the cost of testing and try to advocate for insurance coverage.
  • Other health care providers: Genetic counselors are specialists. That means that we work with a patient's health care provider as a part of a patient's complete care. We always communicate what testing is done and what these results mean.

Ordering genetic testing

These aren't just routine blood tests. How can we help make sure the right one is ordered?

  • Genetic tests can be complex, and not just the paperwork! It can be difficult to know which tests are appropriate for patients based on their personal and family histories. Technological advances in testing are making the choices even more difficult, and genetic counselors are experts to make sure the right test is ordered.

Follow up

  • As most genetic disorders involve lifelong care, genetic counselors often serve as the touchstone for our patients. We coordinate their care amongst numerous specialties and support them across the lifespan. Some of the most rewarding aspects of genetic counseling can include watching our patients grow up, visiting with patients in their next pregnancies, or meeting with family members to help disseminate genetics information to those at risk.

Consultation letters

  • Genetic counseling visit notes are longer than a typical doctor's note, and with good reason. Our letters outline nearly everything that is spoken about in the counseling session, including the personal and family history, explanations of genetics basics and disorders, recommendations for medical management or future testing, and a summary of the relevant counseling issues. This letter can be an invaluable resource for other providers as well as for the patient, who may wish to share this information with his or her family members and loved ones.

Research

  • Many genetic counseling positions involve the opportunity to participate in research. Genetic counselors are trained in gathering information that is very helpful to researchers, like detailed family histories, pregnancy information, etc. Genetic counselors also have unique access to and relationships with special populations of individuals that may be of great interest to the research community. By participating in a team of researchers, a genetic counselor brings his or her valuable, patient-centered perspective and expertise, all while furthering the advances in the care of individuals affected by genetic conditions.
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