Genetics


Every living thing in this world is made of cells. Every cell has genetic material (DNA or RNA). Each strand of this genetic material has many genes. Each gene carries a specific code to make things (like how to make another one of you).

Genetic Testing

Genetic testing is the use of a laboratory test to look for genetic variations associated with a disease. The results of a genetic test can be used to confirm or rule out a suspected genetic disease or to determine the likelihood of a person passing on a mutation to their offspring. Genetic testing may be performed prenatally or after birth. Ideally, a person who undergoes a genetic test will discuss the meaning of the test and its results with a genetic counselor.

National Society for Genetic Counselors  

Genetic Testing and Sudden Cardiac Death (SCD)

One of the first things a parent worries about after one of their children is affected by cardiac arrest is whether or not their other children are also at risk.  Genetic counseling can help address this concern.  Genetic testing is not able to determine all the causes of cardiac arrest but many heart conditions that cause SCD are identifiable.  

When seeking a medical laboratory for genetic testing, it is important to ensure that the laboratory chosen is a Clinical Laboratory Improvement Amendments (CLIA)-approved laboratory.  The Centers for Medicare & Medicaid Services (CMS) regulates all laboratory testing (except research) performed on humans in the U.S. through CLIA.

The process of post-mortem genetic testing includes contacting the medical examiner to request that a blood or tissue sample from the autopsy be sent to the genetic laboratory for examination and testing.  The genetic laboratory may also want blood samples from the parents as well.  It is important to have a physician’s order for the testing because it will be necessary for the laboratory to send the results to the physician.  The genetic laboratory will often send a special kit with which to collect the blood samples and for mailing the blood samples to the laboratory.  Depending on the tests ordered, it may take weeks to months to receive results.  

Post Mortem Genetic Testing Info Sheet

Laboratories

Correlagen
GeneDx   
Genetic Alliance
Laboratory for Molecular Medicine  
Masonic Medical Research Laboratory  
Transgenomic/FAMILION

Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a Federal law that prohibits discrimination in health coverage and employment based on genetic information.

View the Genetic Information Nondiscrimination Act of 2008.

 

Early Detection
Can Save Young Hearts!  

is a national campaign designed to stress the importance of early detection of heart conditions in youth which can lead to Sudden Cardiac Death. 

To order this free important printed material, please submit your complete name, organization name (if applicable), mailing address, telephone number and quantity desired to contact@parentheartwatch.org


YOU Make the Difference!
is a national poster campaign aimed at those who work and live with youth to help educate and increase awareness about the observations and actions that can make the difference between life and death. 

To order these free and timeless posters, please submit your complete name, organization name (if applicable), mailing address, telephone number and number of posters to contact@parentheartwatch.org