Ethical and legal challenges associated with public molecular autopsies

Journal of Law, Medicine and Ethics

Volumn 44, Issue 2, 2016, Pages 309-318

  Moore, Quianta L ^a,b   Majumder, Mary A ^a   Rutherford, Lindsey K ^c   McGuire, Amy L ^a  

^a BAYLOR COLLEGE OF MEDICINE   (United States)

^b RICE UNIVERSITY   (United States)

^c Harris County Institute of Forensic Sciences   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; AUTOPSY; CONFIDENTIALITY; CORONER; DEATH; GENETIC SCREENING; HUMAN; HUMAN TISSUE; PUBLICATION; CADAVER; ETHICS; INFORMED CONSENT;

AUTOPSY; CADAVER; CONFIDENTIALITY; CORONERS AND MEDICAL EXAMINERS; DEATH; GENETIC TESTING; HUMANS; INFORMED CONSENT;

EID: 84985002875     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1177/1073110516654124     Document Type: Article

References (59)

1. C. Semsarian, J. Ingles, and A.A.M Wilde, “Sudden Cardiac Death in the Young: the Molecular Autopsy and a Practical Approach to Surviving Relatives,” European Heart Journal 36, no. 21 (2015): 1290-1296;
2. C. Wang et al., “Using Whole Exome Sequencing and Bioinformatics in the Molecular Autopsy of a Sudden Unexplained Death Syndrome (SUDS) Case,” Forensic Science International (2015):
3. R. Bagnall et al., “Exome Analysis-Based Molecular Autopsy in Cases of Sudden Unexplained Death in the Young,” Heart Rhythm: The Official Journal of the Heart Rhythm Society 11, no. 4 (2014): 655-662;
4. A. Farrugia et al., “Targeted Next Generation Sequencing Application in Cardiac Channelopathies: Analysis of a Cohort of Autopsy-negative Sudden Unexplained Deaths,” Forensic Science International 254 (2015): 5-11;
5. C.L. Hertz et al., “Nextgeneration Sequencing of 100 Candidate Genes in Young Victims of Suspected Sudden Cardiac Death with Structural Abnormalities of the Heart.” International Journal of Legal Medicine (2015):
6. J. Erdmann, “Telltale Hearts,” Nature Medicine 19, no. 11 (2013): 1361-1364;
7. Loporcaro C.G. et al., “Confirmation of Cause and Manner of Death Via a Comprehensive Cardiac Autopsy Including Whole Exome Next-Generation Sequencing,” Archives of Pathology and Laboratory Medicine 138, no. 8 (2013): 1083-1089;
8. D.J. Tester and M.J. Ackerman, “The Molecular Autopsy: Should the Evaluation Continue After the Funeral?” Pediatric Cardiology 33, no. 3 (2012): 461-470;
9. K. Michaud, P. Mangin, and B.S. Elger, “Genetic Analysis of Sudden Cardiac Death Victims: A Survey of Current Forensic Autopsy Practices,” International Journal of Legal Medicine 125 (2011): 359-366;
10. B.S. Elger et al., “Sudden Death: Ethical and Legal Problems of Post-Mortem Forensic Genetic Testing for Hereditary Cardiac Diseases,” Clinical Genetics 77 (2010): 287-292;
11. M.J. Ackerman, “State of Postmortem Genetic Testing Known as the Cardiac Channel Molecular Autopsy in the Forensic Evaluation of Unexplained Sudden Cardiac Death in the Young,” Pacing Clinical Electrophysiology 32, Suppl 2 (2009): S86-S89;
12. K. Michaud et al., “Molecular Autopsy in Sudden Cardiac Death and its Implication for Families: Discussion of the Practical, Legal and Ethical Aspects of the Multidisciplinary Collaboration,” Swiss Med Weekly 139 (2009): 712-718.
13. Id.; SDY registry, available at (last visited April 27, 2016).
14. O. Middleton et al., “National Association of Medical Examiners Position Paper: Retaining Postmortem Samples for Genetic Testing,” Academic Forensic Pathology 3, no. 2 (2013): 191-194.
15. See Tex. Health & Safety Code § 673.002(a), available at (last visited April 27, 2016); Ga. Code Ann. § 45-16-24 (West 2015). See also Coroner/Medical examiner laws by state, available at (last visited April 27, 2016).
16. S.D. Hodge and N.M. Saitta, “Behind the Closed Doors of the Coroner’s Office — The Medical/Legal Secrets Involving an Autopsy,” Temple Journal of Science, Technology & Environmental Law 32 (2013): 1-23;
17. M. J. Panella, “Death Investigation Liability of Medical Examiners and Coroners,” Journal of Legal Medicine 32 (2011): 449-481.
18. See Mass. Gen. Laws Ann. Ch.38 § 3, available at (last visited April 27, 2016);
19. Ariz. Rev. Stat. Ann. § 11-593, available at (last visited April 27, 2016).
20. F.R. Bieger, “Finding Criminals through DNA of their Relatives,” Science 312, no. 5778 (2006): 1315-1316.
21. J.R. Boles, “Documenting Death: Public Access to Government Death Records and Attendant Privacy Concerns,” Cornell Journal of Law & Public Policy 22 (2012): 237-288;
22. J. Berg, “Grave Secrets: Legal and Ethics Analysis of PostMortem Confidentiality,” Connecticut Law Review 34 (2001): 81-122.
23. L.B. Andrews, J.E. Fullarton, N.A. Holtzman, and A.G. Motulsky, eds. Assessing Genetic Risks: Implications for Health and Social Policy (Washington D.C.: National Academies Press, 1994).
24. P.M. Murray, “The History of Informed Consent,” Iowa Orthopaedic Journal 10 (1990): 104-109.
25. Declaration of Helsinki, available at (last visited April 27, 2016).
26. T.L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2013): at 101-340.
27. J. Kleinig, “The Nature of Consent,” in F.G. Miller and A. Wertheimer, eds. The Ethics of Consent (New York: Oxford University Press, 2010): 13-22.
28. A.L. McGuire et al., “Identifying Consanguinity through Routine Genomic Analysis: Reporting Requirements,” Journal of Law Medicine Ethics 40, no. 4 (2012): 1040-1046.
29. The Nuremberg Code (1947) British Medical Journal 313, no. 7070 (1996): 1448, available at (last visited April 27, 2016).
30. The Belmont Report ethical principles and guidelines for the protection of human subjects of research. The National Commission for the protection of human subjects of biomedical and behavioral research; April 18, 1979, available at (last visited April 27, 2016). 20. 45 C.F.R § 46.116 (West 2005). 21. 45 C.F.R § 46.102(f) (West 2015).
31. Notice for Proposed Rulemaking for Regulatory Changes in Common Rule, available at (last visited April 27, 2016).
32. H. Young, “The Right to Posthumous Bodily Integrity and Implications of Whose Right It Is,” Marquette Elder’s Advisor 14, no. 2 (2013): 197-267.
33. A.L. McGuire et al., “Taking DNA from the Dead,” Nature Reviews Genetics 11 (2010): 318.
34. C. Semsarian, et al., “Sudden Cardiac Death in the Young: the Molecular Autopsy and a Practical Approach to Surviving Relatives,” European Heart Journal 36 (2015):1290-1296.
35. N.R. Mucci et al., “Meeting Research Needs with Postmortem Biospecimen Donation: Summary of Recommendations for Postmortem Recovery of Normal Human Biospecimens for Research,” Biopreservation and Biobanking 11, no. 2 (2013): 77-82.
36. S. Schmidt, “Consent for Autopsies,” JAMA 250, no. 9 (1983): 1161-1164.
37. Haw. Rev Stat § 453-15, available at (last visited April 27, 2016).
38. Ad Hoc Committee on Organ Retention, “NAME Position Statement on the Collection, Retention, and Disposition of Biologic Specimens by Medico-legal Investigative Agencies,” available at (last visited April 27, 2016).
39. Mass. Gen. Laws Ann. Ch.38 § 3(5),(11), available at (last visited April 27, 2016).
40. Utah Code Ann. §26-4-7(10),(8), available at (last visited April 27, 2016).
41. L. Forrest et al., “Communicating Genetic Information in Families-A Review of Guidelines and Position Papers,” European Journal of Human Genetics 15 (2007): 612-618.
42. A.C. Sexton, “Disclosing Genetic Research Results After Death of Pediatric Patients,” JAMA 300, no. 14 (2008): 1693-1695.
43. Human Tissue Authority, Human Tissue Act 2004, available at (Last visited April 27, 2016).
44. M.R. Anderlik, “Privacy and Confidentiality of Genetic Information: What rules for the new science?” Annual Review of Genomics and Human Genetics 2 (2001): 401-33.
45. Washington RCW § 68.50.105, available at (last visited April 27, 2016).
46. Tex. Gov. Code § 552.001, available at (last visited April 27, 2016).
47. American Medical Association (AMA), Confidentiality of Health Information Postmortem Opinion 5.051, available at (last visited April 27, 2016).
48. K. Morin, “Confidentiality of Health Information Postmortem,” Archives of Pathology and Laboratory Medicine 125, no. 9 (2001): 1189-92.
49. Z. Lin et al., “Genetics. Genomic Research and Human Subject Privacy,” Science 305, no. 5681 (2004): 183;
50. N. Homer et al., “Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-density SNP Genotyping Microarrays,” PLoS Genetics 29, no. 8 (2008):e1000167. doi: 10.1371/journal.pgen.1000167;
51. M. Gymrek et al., “Identifying Personal Genomes by Surname Inference,” Science 339, no. 6117 (2013):321-4. doi: 10.1126/science.1229566.
52. E.W. Clayton, “Why the Americans with Disabilities Act Matters for Genetics,” JAMA 313, no. 22 (2015): 2225-2226.
53. A.E.R. Prince, “Comprehensive Protection of Genetic Information,” Brooklyn Law Review 79 (2013): 175-227.
54. S.M. Wolf, “Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science,” Annual Reviews Genomics and Human Genetics 14 (2013): 557-77.
55. R.R. Fabsitz, et al., “Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines from an NHLBI Working Group,” Circulation Cardiovascular Genetics 3, no. 6 (2010): 574-580.
56. K. Offit et al, “The ‘Duty to Warn’ a Patient’s Family Members About Hereditary Disease Risks,” JAMA 292, no. 12 (2004): 1469-1473.
57. L. Black, “Familial Communication of Research Results: a Need to Know?” Journal of Law Medicine & Ethics 39, no. 4 (2011): 605-613.
58. B. Elger, K. Michaud, and P. Mangin, “When Information Can Save Lives: The Duty to Warn Relatives about Sudden Cardiac Death and Environment Risks,” Hastings Center Report 40, no. 3 (2010): 39-45.
59. H. MacLeod, E. Demo, C. Honeywell, J. Rutberg, “Genetic Counselors: An Important Resource for Families Following a Young Sudden Cardiac Death,” Academic Forensic Pathology, no.3 (2013): 183-190.