domingo, 24 de julio de 2016

The ethics of conducting molecular autopsies in the cases of sudden death in the young. - PubMed - NCBI

The ethics of conducting molecular autopsies in the cases of sudden death in the young. - PubMed - NCBI



 2016 Jul 13. pii: gr.192401.115. [Epub ahead of print]

The ethics of conducting molecular autopsies in the cases of sudden death in the young.

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 (1). 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 (2). There is growing advocacy for this type of "molecular autopsy" following unexplained death. There are, however, several unresolved ethical and policy issues that must be addressed in order to responsibly conduct molecular autopsies. For example, under most state laws, the medical examiner or coroner (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. Finally, there is little guidance on investigation of causality and disclosure of genetic results to potentially affected family members. As molecular autopsies become more widely adopted, guidance for how best to manage these issues is needed. The Molecular Autopsy Consortium of Houston (MATCH), a collaboration between the Harris County Institute of Forensic Sciences (an integrated operation including Medical Examiner services and Crime Laboratory services) and Baylor College of Medicine, conducted genetic analysis on a large cohort of 351 deceased infants, children, and young adults (age range 0-37) in an effort to determine the cause and manner of death. We propose specific recommendations (Box 1) based on our experience as a multidisciplinary consortium conducting molecular autopsies.
Published by Cold Spring Harbor Laboratory Press.

[PubMed - as supplied by publisher]

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