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Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects

Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This syst...

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Autores principales: Kruse, Judith, Mueller, Regina, Aghdassi, Ali A., Lerch, Markus M., Salloch, Sabine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8826556/
https://www.ncbi.nlm.nih.gov/pubmed/35154238
http://dx.doi.org/10.3389/fgene.2021.701988
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author Kruse, Judith
Mueller, Regina
Aghdassi, Ali A.
Lerch, Markus M.
Salloch, Sabine
author_facet Kruse, Judith
Mueller, Regina
Aghdassi, Ali A.
Lerch, Markus M.
Salloch, Sabine
author_sort Kruse, Judith
collection PubMed
description Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This systematic review presents a detailed overview of ethical aspects relevant to genetic testing for rare diseases as discussed in the literature. The electronic databases Pubmed, Science Direct and Web of Science were searched, resulting in 55 relevant publications. From the latter, a total of 93 different ethical aspects were identified. These ethical aspects were structured into three main categories (process of testing, consequences of the test outcome and contextual challenges) and 20 subcategories highlighting the diversity and complexity of ethical aspects relevant to genetic testing for rare diseases. This review can serve as a starting point for the further in-depth investigation of particular ethical issues, the education of healthcare professionals regarding this matter and for informing international policy development on genetic testing for rare diseases.
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spelling pubmed-88265562022-02-10 Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects Kruse, Judith Mueller, Regina Aghdassi, Ali A. Lerch, Markus M. Salloch, Sabine Front Genet Genetics Genetic testing is associated with many ethical challenges on the individual, organizational and macro level of health care systems. The provision of genetic testing for rare diseases in particular requires a full understanding of the complexity and multiplicity of related ethical aspects. This systematic review presents a detailed overview of ethical aspects relevant to genetic testing for rare diseases as discussed in the literature. The electronic databases Pubmed, Science Direct and Web of Science were searched, resulting in 55 relevant publications. From the latter, a total of 93 different ethical aspects were identified. These ethical aspects were structured into three main categories (process of testing, consequences of the test outcome and contextual challenges) and 20 subcategories highlighting the diversity and complexity of ethical aspects relevant to genetic testing for rare diseases. This review can serve as a starting point for the further in-depth investigation of particular ethical issues, the education of healthcare professionals regarding this matter and for informing international policy development on genetic testing for rare diseases. Frontiers Media S.A. 2022-01-26 /pmc/articles/PMC8826556/ /pubmed/35154238 http://dx.doi.org/10.3389/fgene.2021.701988 Text en Copyright © 2022 Kruse, Mueller, Aghdassi, Lerch and Salloch. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Genetics
Kruse, Judith
Mueller, Regina
Aghdassi, Ali A.
Lerch, Markus M.
Salloch, Sabine
Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title_full Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title_fullStr Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title_full_unstemmed Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title_short Genetic Testing for Rare Diseases: A Systematic Review of Ethical Aspects
title_sort genetic testing for rare diseases: a systematic review of ethical aspects
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8826556/
https://www.ncbi.nlm.nih.gov/pubmed/35154238
http://dx.doi.org/10.3389/fgene.2021.701988
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