The reuse of genetic information in research and informed consent.

Autor: Lorenzo D; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.; EUI San Joan de Deu, Barcelona, Spain., Esquerda M; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain. mesquerda@ibb.url.edu.; Sant Joan de Deu Terres de Lleida, Lleida, Spain. mesquerda@ibb.url.edu., Bofarull M; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Cusi V; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Roig H; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Bertran J; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Carrera J; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Torralba F; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Cambra FJ; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain.; Hospital Universitari Sant Joan de Déu Barcelona, Barcelona, Spain., Vila M; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Garriga M; Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain., Palau F; Department of Genetic Medicine and Pediatric Institut of Rare Diseases, Hospital Sant Joan de Déu, Barcelona, Spain.; Institut de Recerca Sant Joan de Déu, Barcelona, Spain.; CIBER de Enfermedades Raras, ISCIII, Madrid, Spain.; Division of Pediatrics, University of Barcelona School of Medicine and Health Sciences, Barcelona, Spain.
Jazyk: angličtina
Zdroj: European journal of human genetics : EJHG [Eur J Hum Genet] 2023 Dec; Vol. 31 (12), pp. 1393-1397. Date of Electronic Publication: 2023 Sep 13.
DOI: 10.1038/s41431-023-01457-y
Abstrakt: Important advances in genetics research have been made in recent years. Such advances have facilitated the availability of huge amounts of genetic information that could potentially be reused beyond the original purpose for which such information was obtained. Any such reuse must meet certain ethical criteria to ensure that the dignity, integrity, and autonomy of the individual from whom that information was obtained are protected. The aim of this paper is to reflect on these criteria through a critical analysis of the literature. To guarantee these values, ethical criteria need to be established in several respects. For instance, the question must be posed whether the information requires special attention and protection (so-called genetic exceptionalism). Another aspect to bear in mind is the most appropriate type of consent to be given by the person involved, on the one hand favouring research and the reuse of genetic information while on the other protecting the autonomy of that person. Finally, there is a need to determine what protection such reuse should have in order to avoid detrimental consequences and protect the rights of the individual. The main conclusions are that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type of consent for the reuse of genetic information.
(© 2023. The Author(s), under exclusive licence to European Society of Human Genetics.)
Databáze: MEDLINE
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