Human and Molecular Genetics CenterGenetic Counseling

Family Histories

Neurogenetic Counseling

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What is "neurogenetic counseling"?

Neurogenetic counseling aims to help patients understand inherited neurological conditions, identify individuals and families at risk, and interpret complex genetic concepts into practical information. By identifying patients with an inherited predisposition to a neurological condition, genetic counselors work collaboratively with a team of neurologists and other specialists to aid in the diagnosis, management, and care planning.

Just as we have discovered the inherited cause of certain types of cancer and other illnesses, we know there are genes that can cause inherited forms of neurological disease, such as movement disorders (like Ataxia or Huntington’s disease), epilepsy, or muscular dystrophies.  By identifying the genetic basis of neurological disease within a family, we may help patients and their relatives develop a better understanding of the condition, aid in appropriate preparations for care, and help with family planning decisions.

Who should see a neurogenetic counselor?

Anyone with a family or personal history of the following:

  • Huntington’s disease
  • Muscular Dystrophies
  • Familial Ataxias
  • Familial Epilepsy
  • Hereditary Spastic Paraplegia
  • Familial Amyotrophic Lateral Sclerosis
  • Familial Dystonia
  • Charcot-Marie-Tooth disease
  • Individuals with multiple hemangioblastomas of the brain and/or spinal cord

What will happen at the appointment?

An appointment with the genetic counselor typically involves:

  • Collect a detailed focused personal and family medical history called a “genetic pedigree”
  • Determine whether or not the history is suggestive of an inherited neurologic syndrome
  • Discuss the risks, benefits, and limitations of genetic testing including insurance coverage
  • Review medical management options with or without genetic testing
  • Facilitate communication between patients and their families regarding risk information and recommendations
  • Discuss reproductive risks and options

Will my insurance cover this?

An appointment with a genetic counselor is treated like any other visit with a health care provider. These visits are billable to your insurance company. Genetic counselors bill for their services under a supervising physician at Froedtert and the Medical College of Wisconsin. If your insurance company allows for coverage of visits with physicians at Froedtert and the Medical College of Wisconsin, coverage for genetic counseling services is expected.  Our patients rarely encounter problems with insurance coverage. If you have specific questions regarding coverage of a scheduled appointment with one of our genetic counselors, we always suggest you call our program at (414) 955-5899.

Insurance coverage and pre-authorization of genetic testing is best discussed with the genetic counselor during the scheduled appointment. There is no need for the patient or referring physician to pre-authorize genetic tests prior to the visit with the genetic counselor. The genetic counselor will determine which genetic test may be appropriate during the patient’s visit, and insurance coverage and pre-authorization will be discussed at that time. Genetic testing is specialized testing, and genetic counselors are very familiar with billing process.

Questions about insurance discrimination?  Please see our informational link here