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The ‘serious’ factor in germline modification

Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible fo...

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Autores principales: Kleiderman, Erika, Ravitsky, Vardit, Knoppers, Bartha Maria
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6820154/
https://www.ncbi.nlm.nih.gov/pubmed/31326898
http://dx.doi.org/10.1136/medethics-2019-105436
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author Kleiderman, Erika
Ravitsky, Vardit
Knoppers, Bartha Maria
author_facet Kleiderman, Erika
Ravitsky, Vardit
Knoppers, Bartha Maria
author_sort Kleiderman, Erika
collection PubMed
description Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies.
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spelling pubmed-68201542019-11-13 The ‘serious’ factor in germline modification Kleiderman, Erika Ravitsky, Vardit Knoppers, Bartha Maria J Med Ethics Current Controversy Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies. BMJ Publishing Group 2019-08 2019-07-20 /pmc/articles/PMC6820154/ /pubmed/31326898 http://dx.doi.org/10.1136/medethics-2019-105436 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Current Controversy
Kleiderman, Erika
Ravitsky, Vardit
Knoppers, Bartha Maria
The ‘serious’ factor in germline modification
title The ‘serious’ factor in germline modification
title_full The ‘serious’ factor in germline modification
title_fullStr The ‘serious’ factor in germline modification
title_full_unstemmed The ‘serious’ factor in germline modification
title_short The ‘serious’ factor in germline modification
title_sort ‘serious’ factor in germline modification
topic Current Controversy
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6820154/
https://www.ncbi.nlm.nih.gov/pubmed/31326898
http://dx.doi.org/10.1136/medethics-2019-105436
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