Unlocking Answers to Sudden, Unexplained Deaths Through Postmortem Genetic Testing

USU’s MiCAP Program Uses Genetic Testing to Uncover Causes of Sudden Cardiac Death and Safeguard Military Families

October 17, 2024 by Sharon Holland

Imagine losing a loved one to sudden, unexplained death—an event so devastating that even an autopsy can’t provide answers. This haunting uncertainty has been a challenge for medical examiners, especially when it comes to younger individuals. But now, thanks to significant advancements in postmortem genetic testing, families are getting the answers they deserve. Leading the charge is the Military Cardiovascular Arrest Program (MiCAP) Postmortem Genetics Team at the Uniformed Services University. This team – Dr. Lydia Hellwig, assistant professor of Pediatrics, Austin Pagani, assistant professor of Medicine, Emma Schopp, assistant professor of Medicine, and Dr. Mark Haigney, professor of Medicine – is breaking down barriers and providing a crucial service: genetic evaluations for individuals in the U.S. Military Health System, helping to bring clarity—and perhaps even life-saving insight—to families.

Postmortem genetic testing, also known as molecular autopsy, has emerged as a crucial tool for determining the causes of sudden, unexplained deaths. Over the years, it has gained increasing recognition from leading medical organizations such as the American College of Medical Genetics and Genomics and the Heart Rhythm Society. In cases where a cardiac event or genetic condition is suspected, particularly in deaths of individuals under 40, genetic testing has been shown to provide valuable answers.  

USU's Military Cardiovascular Arrest Program (MiCAP) Postmortem Genetics Team visits the Armed Forces

Medical Examiner's office in Dover, Delaware. (Photo credit: MiCAP Postmortem Genetics Team)

Sudden cardiac death is notably more common among active-duty military personnel, often occurring without prior symptoms or family history. Studies have shown that nearly half of victims under 35 show no abnormalities during traditional autopsies, making genetic testing crucial for understanding these deaths and identifying risks in surviving relatives. The unique demands of military life—high-intensity training, stress, and physical exertion—can exacerbate dormant genetic conditions, heightening the risk. MiCAP addresses this challenge by offering early genetic risk identification, crucial for protecting service members' health and maintaining military operational readiness.

The MiCAP Postmortem Genetics Team plays a vital role in supporting medical examiners by assisting in the selection, coordination, and interpretation of genetic tests, and by providing consultation for cases that may benefit from postmortem genetic testing. The team's involvement doesn't end with the test results—they also work closely with the decedent's family to explain the results and provide tailored recommendations based on clinical guidelines.

One of the program's key goals is to expand the use of postmortem genetic testing by overcoming obstacles related to cost, logistics, and access to genetics expertise. Medical examiners who use the program’s services can rest assured that families will receive testing and consultation at no cost—a significant relief, particularly when grappling with the sudden loss of a loved one.

Medical examiners face numerous challenges when it comes to collecting and submitting samples for genetic testing, from logistical hurdles to navigating costs. The MiCAP reference sheet was designed to address these challenges by providing clear guidance on the types of samples that can be used and how they should be collected and stored. For example, the ideal sample for postmortem genetic testing at the DHA Genetics Reference Laboratory is a 3 mL blood sample in a sodium/EDTA tube, though alternative samples can also be used when necessary. By offering this practical information, the reference sheet simplifies the process for medical examiners, making it easier for them to ensure that proper samples are retained for future testing.

The medical examiners’ reference sheet has been particularly well-received by professionals in the field. It offers a valuable resource for spreading awareness about the services MiCAP provides—especially to civilian medical examiners, who often handle autopsies for military health system beneficiaries. By doing so, the program seeks to increase access to and the impact of these critical services.

In up to 35% of cases involving sudden, unexplained death in young individuals, postmortem genetic testing identifies a genetic cause. Most frequently, these tests uncover conditions related to cardiac diseases, such as inherited arrhythmias or cardiomyopathies. The identification of such genetic markers is not only critical for understanding the cause of death but also has profound implications for surviving family members.

Postmortem Genetic Testing Guide for Families (Courtesy of MiCAP)

When a genetic cause of death is discovered, family members at risk can be tested for the same genetic marker. If they are found to carry the variant, they can receive targeted medical care—such as increased cardiac monitoring or the placement of an implantable cardiac defibrillator—to prevent similar outcomes. Even for family members who do not carry the genetic marker, the results offer reassurance, knowing that they are not at heightened risk.

The MiCAP Postmortem Genetics Team’s work represents just the beginning of what promises to be a growing field. As genetic research and technology continue to evolve, so too will the ability to diagnose and prevent sudden, unexplained deaths in both military and civilian populations. The ultimate goal is to expand access to genetic testing and multidisciplinary evaluations across the board, ensuring that at-risk populations can benefit from these advancements.  

Through continued collaboration with other institutions, like the National Institutes of Health, MiCAP is poised to play a central role in advancing understanding of genetic risk factors in sudden death. 

“The next 5–10 years will likely see significant progress in this area, as researchers and clinicians work together to prevent these tragic and often preventable deaths,” says Haigney. 

“By filling this critical gap in care, the MiCAP Postmortem Genetics Team is not only helping to solve the mystery of sudden deaths but also offering hope to surviving family members—ensuring that lives can be saved through proactive medical management.”