Postmortem genetic testing can play an essential role in identifying the cause(s) of death in cases where sudden and unexpected loss occurs. It can also help determine if blood relatives are at risk for genetic diseases or sudden death.
The SUDC Foundation recognizes that postmortem genetic testing is a vital and important part of a child’s sudden death investigation. We encourage families to speak with their medical examiner and or coroner about the importance and opportunity for postmortem genetic testing as part of their child’s investigation.
When appropriate, the SUDC Foundation recommends families explore options to receive postmortem genetic testing for their child as this type of testing could provide key insights about their child’s passing.
Some potential benefits of genetic testing include:
The SUDC Foundation is dedicated to supporting medical examiners and coroners who are actively investigating SUDC cases by removing barriers to accessing postmortem genetic testing, ensuring both professional and affected families have the support and resources needed for a thorough and comprehensive investigation.
Postmortem genetic testing is testing that is performed on a sample after an individual has died. The goal of postmortem genetic testing is often to try to identify the cause of death and/or identify if blood relatives are at-risk for a genetic disease or sudden death.
Whole exome sequencing or WES is a genetic sequencing technique that analyzes a person’s DNA to identify changes that may be causing a medical condition. It is a widely used next-generation sequencing (NGS) method that involves sequencing the protein-coding regions of the genome.
Each office has a different policy that governs the samples collected and length of time a sample is retained. When that time is reached, samples are disposed of. To ensure the best chance for you to have your child’s sample tested, we suggest you ask the office what samples it has, how long they will be stored, how they are being stored and what preservatives are used.
1. Tester DJ, et al. The molecular autopsy: Should the evaluation continue after the funeral? Pediatr Cardiol. 2012 Mar 33(3):461-70. Epub 2012 Feb 4.
2. Behr 2003 et al “Cardiological assessment of first-degree relatives in sudden arrhythmic death syndrome.” Lancet. 2003 Nov 1, 362(9394):1457-9.
3. Tan, et al. (2003). “Sudden unexplained death: Heritability and diagnostic yield of cardiological and genetic examination in surviving relatives.” Circulation. 2005 Jul 12;112(2):207-13. Epub 2005 Jul 5.
4. Ackerman MJ, Priori SG, Willems S, Berul C, Brugada R, Calkins H, Camm AJ, Ellinor PT, Gollob M, Hamilton R, Hershberger RE, Judge DP, Le Marec H, McKenna WJ, Schulze-Bahr E, Semsarian C, Towbin JA, Watkins H, Wilde A, Wolpert C, and Zipes DP. Heart Rhythm. 2011 Aug, 8(8):1308-39. HRS/EHRA Expert Consensus Statement on the State of Genetic Testing for the Channelopathies and Cardiomyopathies. This document was developed as a partnership between the Heart Rhythm Society (HRS) and the European Heart Rhythm Association (EHRA)
If you have any questions, please contact the SUDC Foundation for assistance. The SUDC Foundation is here to help with any or all of this process.
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