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American Family Children's Hospital
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Genetic Counseling and the Inherited Arrhythmias Clinic

 

Genetics counselor Kate Orland

For patients faced with the possibility of an inherited cardiac condition, UW Health's Inherited Arrhythmia's Clinic offers genetic counseling to help patients and families understand the diagnosis.

 

What is a genetics counselor?

 

A genetics counselor is a certified health care provider with specialized training in both genetics and counseling. This provider can help a person and their family members navigate the process of considering the benefits and limitations to genetic testing. In addition, they are trained to help the person or family understand and cope with their diagnosis and what it would mean for their lives and that of their family members.

 

Meeting with Our Genetics Counselor

 

The first appointment in the Inherited Arrhythmias Clinic will include a meeting with the clinic genetic counselor. This meeting may include:

  • Discussion of your medical history and your family history: The genetic counselor creates a detailed pedigree (family tree) of your family and any symptoms suggestive of an inherited arrhythmia condition. This family history information can help us gain a more thorough understanding of your diagnosis and any other relatives that may also have the same inherited cardiac condition. Once we have an idea of the family's cardiac history, we can be fully informed when making recommendations about pursuing genetic testing and screening for your relatives. In order to best prepare for this process, it could be helpful to communicate with your relatives ahead of time to determine some of the following information:
    • Any "heart attacks" or unexplained sudden deaths at young ages?
    • Any unexplained fainting or seizures?
    • Anyone with heart failure?
    • Any relatives with an abnormal heart rhythm or arrhythmia?
    • Anyone with a pacemaker or an ICD (internal defibrillator)?
  • Discussion and recommendations for genetic testing: Genetic testing is now commercially available for most inherited cardiac conditions. Genetic testing can help make a clear diagnosis of your cardiac condition as well as provide us with information that can assess which of your relatives may be at risk for the development of cardiac symptoms. Although it can be helpful to many patients, the decision to pursue genetic testing involves careful consideration and the genetic counselor will walk you through this process. It is important for patients to understand what information genetic testing can and cannot provide to you and your family. Other aspects of genetic testing, such as insurance coverage and concerns about possible insurance discrimination, will be discussed as part of your visit with the genetic counselor. 
  • Support and counseling for coping with an inherited cardiac condition: It can be stressful and challenging to receive a diagnosis of an inherited cardiac condition. There may be implications and concerns for yourself and your family members. The genetic counselor can serve as a supportive presence and a resource for additional information as you and your family experience the emotions associated with the news of your diagnosis.