Sudden death: ethical and legal problems of post-mortem forensic genetic testing for hereditary cardiac diseases.

Details

Serval ID
serval:BIB_565C1AAF07CF
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Sudden death: ethical and legal problems of post-mortem forensic genetic testing for hereditary cardiac diseases.
Journal
Clinical Genetics
Author(s)
Elger B.S., Michaud K., Fellmann F., Mangin P.
ISSN
1399-0004
0009-9163
Publication state
Published
Issued date
2010
Volume
77
Number
3
Pages
287-292
Language
english
Notes
Publication types: Journal Article
PDF: Short Report
Abstract
Hereditary non-structural diseases such as catecholaminergic polymorphic ventricular tachycardia (CPVT), long QT, and the Brugada syndrome as well as structural disease such as hypertrophic cardiomyopathy (HCM) and arrhythmogenic right ventricular cardiomyopathy (ARVC) cause a significant percentage of sudden cardiac deaths in the young. In these cases, genetic testing can be useful and does not require proxy consent if it is carried out at the request of judicial authorities as part of a forensic death investigation. Mutations in several genes are implicated in arrhythmic syndromes, including SCN5A, KCNQ1, KCNH2, RyR2, and genes causing HCM. If the victim's test is positive, this information is important for relatives who might be themselves at risk of carrying the disease-causing mutation. There is no consensus about how professionals should proceed in this context. This article discusses the ethical and legal arguments in favour of and against three options: genetic testing of the deceased victim only; counselling of relatives before testing the victim; counselling restricted to relatives of victims who tested positive for mutations of serious and preventable diseases. Legal cases are mentioned that pertain to the duty of geneticists and other physicians to warn relatives. Although the claim for a legal duty is tenuous, recent publications and guidelines suggest that geneticists and others involved in the multidisciplinary approach of sudden death (SD) cases may, nevertheless, have an ethical duty to inform relatives of SD victims. Several practical problems remain pertaining to the costs of testing, the counselling and to the need to obtain permission of judicial authorities.
Keywords
Death, Sudden, Cardiac/etiology, Family, Forensic Genetics/economics, Forensic Genetics/ethics, Genetic Counseling, Heart Diseases/genetics, Humans
Pubmed
Web of science
Create date
21/01/2010 17:50
Last modification date
20/08/2019 15:10
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