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What Do Genetic Counselors Do?

Genetic counselors are part of your healthcare team

Most genetic counselors work in a clinic or hospital, and often work with obstetricians, oncologists and other doctors. Like doctors, genetic counselors can work in a variety of settings and provide different services. They may provide general care, or specialize in one or more areas, including:

  • Prenatal and Preconception – for those who are pregnant or thinking about becoming pregnant
  • Pediatric – for children and their family members
  • Cancer – for patients with cancer and their family members
  • Cardiovascular – for patients with diseases of the heart or circulatory system and their family members
  • Neurology – for patients with diseases of the brain and nervous system and their family members

Additionally, some genetic counselors focus on research, including collecting information such as detailed family histories and pregnancy information, which helps in the development of new or improved treatment or care for people with genetic conditions.

When might you see a genetic counselor?

Genetic counselors work with patients in a variety of situations. For example, you might consult with a genetic counselor if:

  • You are pregnant, or thinking about becoming pregnant, and you are concerned about your baby’s health. For example, you might be:
    • Concerned about an inherited condition in your family and want to know the risk of your baby having that condition
    • Considering what common genetic tests your baby should have, such as for Down syndrome
  • You are pregnant, had genetic testing and your baby received an abnormal test result
  • You, your child or a family member has been diagnosed with a genetic condition
  • A close relative has been diagnosed with cancer, Alzheimer’s disease or some other condition that may be due to an inherited gene, and you wonder if you or your children might have that gene
  • You would like advice for sharing genetic information with relatives
  • Your family has a history of birth defects or other genetic conditions

What happens during a meeting with a genetic counselor?

Most people will meet with a genetic counselor face-to-face for one or two visits, possibly more often depending on your needs and situation. You can meet with the genetic counselor alone, with your spouse or with your family.

During your meeting, the genetic counselor will:

  • Take a full family history, asking about:
    • Significant medical diagnoses
    • Family members with conditions, including cancer, intellectual disabilities, autism, birth defects or other genetic conditions
  • Discuss the reason for the referral, whether strong family history, a pregnancy with an abnormality discovered on ultrasound, or other genetic health concern.
  • Talk about decisions that may need to be made. Whether or not to have a genetic test is a personal decision that comes with many emotional consequences. Genetic counselors can talk through the pros and cons of any testing and treatment options and help you navigate difficult choices.
  • Discuss prevention, disease management and options if test results are positive.
  • Provide emotional support during what can be a challenging and confusing time.
  • Offer resources and advocacy for more information if desired.

Additionally, genetic counselors:

  • Discuss options – After meeting with each patient, the genetic counselor will discuss possible next steps and any options for genetic testing. The genetic counselor will provide a written summary that includes what was discussed in the session, such as personal and family history and explanations of genetics and disorders.
  • May advise on genetic tests – Genetic counselors have the expertise to understand the complexity of genetic tests.  If you do want to pursue testing, they ensure the correct test is ordered based on your personal and family history.
  • Communicate – Genetic counselors answer additional questions and provide you with ongoing support, work with laboratories to ensure the correct testing is being performed, contact insurance companies to advocate for coverage, notify patients of test results, and communicate with your doctor about tests performed and what the results mean.

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