Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

Abstract Background Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and S...

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Autores principales:	Tania Ascencio-Carbajal, Garbiñe Saruwatari-Zavala, Fernando Navarro-Garcia, Eugenio Frixione
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Genetic testing Genomic testing Ethical Legal and social implications Bioethics Genomic medicine Medical philosophy. Medical ethics R723-726
Acceso en línea:	https://doaj.org/article/4009a9703b824cafa5d0c755261d3078
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spelling	oai:doaj.org-article:4009a9703b824cafa5d0c755261d30782021-11-28T12:03:29ZGenetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)10.1186/s12910-021-00720-51472-6939https://doaj.org/article/4009a9703b824cafa5d0c755261d30782021-11-01T00:00:00Zhttps://doi.org/10.1186/s12910-021-00720-5https://doaj.org/toc/1472-6939Abstract Background Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and harmful choices. Methods We analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine. Results We identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT. Conclusions We propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.Tania Ascencio-CarbajalGarbiñe Saruwatari-ZavalaFernando Navarro-GarciaEugenio FrixioneBMCarticleGenetic testingGenomic testingEthicalLegal and social implicationsBioethicsGenomic medicineMedical philosophy. Medical ethicsR723-726ENBMC Medical Ethics, Vol 22, Iss 1, Pp 1-15 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Genetic testing Genomic testing Ethical Legal and social implications Bioethics Genomic medicine Medical philosophy. Medical ethics R723-726
spellingShingle	Genetic testing Genomic testing Ethical Legal and social implications Bioethics Genomic medicine Medical philosophy. Medical ethics R723-726 Tania Ascencio-Carbajal Garbiñe Saruwatari-Zavala Fernando Navarro-Garcia Eugenio Frixione Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
description	Abstract Background Genetic/genomic testing (GGT) are useful tools for improving health and preventing diseases. Still, since GGT deals with sensitive personal information that could significantly impact a patient’s life or that of their family, it becomes imperative to consider Ethical, Legal and Social Implications (ELSI). Thus, ELSI studies aim to identify and address concerns raised by genomic research that could affect individuals, their family, and society. However, there are quantitative and qualitative discrepancies in the literature to describe the elements that provide content to the ELSI studies and such problems may result in patient misinformation and harmful choices. Methods We analyzed the major international documents published by international organizations to specify the parameters that define ELSI and the recognized criteria for GGT, which may prove useful for researchers, health professionals and policymakers. First, we defined the parameters of the ethical, legal and social fields in GGT to avoid ambiguities when using the acronym ELSI. Then, we selected nine documents from 44 relevant publications by international organizations related to genomic medicine. Results We identified 29 ELSI sub-criteria concerning to GGT, which were organized and grouped within 10 minimum criteria: two from the ethical field, four from the legal field and four from the social field. An additional analysis of the number of appearances of these 29 sub-criteria in the analyzed documents allowed us to order them and to determine 7 priority criteria for starting to evaluate and propose national regulations for GGT. Conclusions We propose that the ELSI criteria identified herein could serve as a starting point to formulate national regulation on personalized genomic medicine, ensuring consistency with international bioethical requirements.
format	article
author	Tania Ascencio-Carbajal Garbiñe Saruwatari-Zavala Fernando Navarro-Garcia Eugenio Frixione
author_facet	Tania Ascencio-Carbajal Garbiñe Saruwatari-Zavala Fernando Navarro-Garcia Eugenio Frixione
author_sort	Tania Ascencio-Carbajal
title	Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
title_short	Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
title_full	Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
title_fullStr	Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
title_full_unstemmed	Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)
title_sort	genetic/genomic testing: defining the parameters for ethical, legal and social implications (elsi)
publisher	BMC
publishDate	2021
url	https://doaj.org/article/4009a9703b824cafa5d0c755261d3078
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Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI)

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