Genetic Counselors' Approach To Postmortem Genetic Testing After Sudden Death: An Exploratory Study

Area of Science:

• Forensic Genetics
• Medical Genetics
• Genetic Counseling

Background:

• Sudden death often has a genetic cause, detectable via postmortem genetic testing.
• The National Association of Medical Examiners (NAME) advises saving postmortem samples for sudden deaths under 40.
• Genetic counselors (GCs) are crucial in guiding medical examiners/coroners (ME/Cs) and families through genetic testing.

Purpose of the Study:

• To explore genetic counselors' experiences with postmortem genetic testing.
• To identify factors influencing the recommendation and utilization of postmortem genetic testing.

Main Methods:

• A survey was distributed to members of the National Society of Genetic Counselors.
• The survey gathered data on GCs' experiences, willingness to order tests, and perceived barriers.

Main Results:

• Cardiovascular genetic counselors were more inclined to recommend testing in younger decedents compared to other specialties.
• 37% of GCs reported some insurance coverage for genetic testing.
• Fresh and frozen blood samples yielded the highest DNA extraction success rates.

Conclusions:

• Genetic counselors possess a strong understanding of postmortem genetic testing applications.
• Barriers such as cost and insurance coverage need addressing to improve access.
• Continued ME/C awareness of NAME sample collection guidelines is vital for facilitating testing.