The ethics of conducting molecular autopsies in cases of sudden death in the young
- Amy L. McGuire1,6,
- Quianta Moore1,2,6,
- Mary Majumder1,6,
- Magdalena Walkiewicz3,
- Christine M. Eng3,
- John W. Belmont3,
- Salma Nassef3,
- Sandra Darilek3,
- Katie Rutherford4,
- Stacey Pereira1,
- Steven E. Scherer3,5,
- V. Reid Sutton3,
- Dwayne Wolf4,
- Richard A. Gibbs3,5,
- Roger Kahn4,
- Luis A. Sanchez4,
- the Molecular Autopsy Consortium of Houston (MATCH)7
- 1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA;
- 2Rice University Baker Institute for Public Policy, Houston, Texas 77005, USA;
- 3Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas 77030, USA;
- 4Harris County Institute of Forensic Sciences, Houston, Texas 77030, USA;
- 5Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA
- Corresponding author: amcguire{at}bcm.edu
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↵6 These authors contributed equally to this work.
This extract was created in the absence of an abstract.
In an effort to identify the cause of sudden death, especially in the young (SDY), the National Association of Medical Examiners (NAME) recommends retaining samples for genetic testing in all cases where an autopsy is performed (Middleton et al. 2013). On September 30, 2014, the Centers for Disease Control and Prevention, in collaboration with the National Institutes of Health, launched an ambitious effort aimed at addressing the devastating impact of SDY by providing funding for 10 states to expand the existing Sudden Unexpected Infant Death Case Registry into a comprehensive SDY Registry and to enhance the value of that resource for public health and research purposes, chiefly through introduction of a standardized autopsy protocol and collection of biospecimens for DNA analysis (http://www.nhlbi.nih.gov/news/press-releases/2014/nih-and-cdc-announce-grantees-sudden-death-young-registry).
This collection of blood and tissue for DNA analysis, or the “molecular autopsy,” is an increasingly pervasive tool in investigating SDY cases, the majority of which fall within the category of sudden cardiac death (SCD) (Semsarian and Hamilton 2012; Farrugia et al. 2015; Wang et al. 2015). There are, however, several unresolved ethical and policy issues that must be addressed for the responsible conduct of molecular autopsies as part of a death investigation by medical examiner or coroner offices (ME/C). For example, under most state laws, the ME/C has a statutory obligation to investigate unexpected deaths and authority to proceed without informing the family about the scope of the investigation. In addition, autopsy reports may be subject to public disclosure requirements that take little or no account of implications for family members, while the protocols for disclosing the genetic results to potentially affected family members remain conflicted (Elger et al. 2010; Boers et al. 2015) As molecular autopsies become more widely integrated into public death …
