Understanding and Navigating Postmortem Genetic Testing in Genetic Counseling Practice

Overview
Contents (3)

This course is designed to help genetic counselors build a practical understanding of postmortem genetic testing (PMGT) and its role in clinical care, death investigation, and family risk assessment. Learners will examine when PMGT should be considered, how testing is integrated into clinical and medicolegal workflows, and how sample availability, consent, laboratory testing, billing, documentation, ethical issues, and psychosocial considerations can affect the process. Through expert perspectives and case-based content, the course emphasizes interdisciplinary collaboration and the genetic counselor’s role in supporting families, coordinating PMGT, and improving access to this area of testing.

Presented by:

1. Rebecca McClellan, MGC, LCGC
2. Margaret Drohen, MS
3. Emma Schopp, ScM, CGC
4. Leslie KW Cyprych, MS, MPH, CGC
5. Alison Krywanczyk, MD
6. Susan F. Ely, MD, MPHTM
7. Lisa Dellefave-Castillo, MS, CGC
8. Heather MacLeod, MS, CGC
9. Abigail Yesso, MS, CGC
10. Layne Wells-Copeland, MGC, CGC
11. Erin M. Miller, MS, CGC

Learning Objectives:

1. Describe the clinical utility of PMGT and identify scenarios in which PMGT may be appropriate for a deceased individual and their surviving biological relatives.
2. Assess postmortem sample availability and suitability for genetic testing, including collection methods, handling requirements, professional roles, and barriers that may affect testing feasibility.
3. Coordinate PMGT in clinical and medicolegal settings by considering laboratory test options, interpretation limitations, billing and coverage, documentation, consent, ethical and legal considerations, and psychosocial needs of families.
4. Discuss a sudden death case that describes the psychosocial impact.
5. Differentiate postmortem genetic testing from other genetic testing contexts.
6. Describe postmortem genetic testing’s clinical utility and workflow for living relatives.
7. Compare the different systems of death investigation across the United States, and describe the difference between a hospital autopsy and a forensic autopsy.
8. Discuss the practical, financial, and educational factors which impact the utilization of postmortem genetic testing in the United States.
9. Recognize the importance, benefits, and goals of molecular genetic testing (MGT) in forensic pathology practice.
10. Recognize the specific postmortem circumstances in which MGT is appropriate.
11. Identify medical disease categories with potential molecular genetic relevance and key components of the investigative approach to each.
12. Recall sample collection, storage, and testing practices, molecular testing techniques and reporting standards, and the most commonly-encountered (fatal) mutations.
13. Identify logistical, sample-related, and practice-based barriers that affect the feasibility of postmortem genetic testing.
14. Recall common sample types collected through medical examiners, coroners, funeral directors and the importance of chain of custody for samples.
15. Identify common limitations for PGMT and how types of genetic testing can differ in PGMT.
16. Evaluate the ethical, legal, and social complexities of postmortem genetic testing for hereditary cardiovascular disease through evolving privacy protections for sensitive familial genetic data under HIPAA and state public record laws.
17. Analyze tension between statutory public health death investigations and the legal hierarchy of family consent.
18. Examine the common emotions and psychological impacts of sudden death and identify strategies for working with families.
19. Describe how PMGT is currently inequitable and should be implemented at the public health level.
20. Identify key components required in clinical documentation for cases involving postmortem genetic testing.
21. Evaluate how different referral pathways influence the required forms and location of documentation in postmortem genetic testing cases.
22. Describe at least three strategies for engaging medicolegal death investigation partners in the development of a postmortem genetic testing program

Genetic Counselor CEUs

The National Society of Genetic Counselors (NSGC) has authorized the National Society of Genetic Counselors (NSGC) to offer up to .411 CEUs or 4.11 Category 1 contact hours for the activity, Understanding and Navigating Postmortem Genetic Testing in Genetic Counseling Practice. The American Board of Genetic Counseling (ABGC) will accept CEUs earned by participating in this program for the purposes of genetic counselor recertification.