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Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy

Genetic diseases have been thought to be acquired as a result of sheer bad luck. However, recent advances in medical science have demonstrated the mechanisms of genetic disorders, which enable us to intervene with their occurrence and treatment. Today, gene therapy, once considered too risky, has be...

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Autores principales: Ekmekci, PE, Güner, MD
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Sciendo 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6714335/
https://www.ncbi.nlm.nih.gov/pubmed/31523623
http://dx.doi.org/10.2478/bjmg-2019-0008
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author Ekmekci, PE
Güner, MD
author_facet Ekmekci, PE
Güner, MD
author_sort Ekmekci, PE
collection PubMed
description Genetic diseases have been thought to be acquired as a result of sheer bad luck. However, recent advances in medical science have demonstrated the mechanisms of genetic disorders, which enable us to intervene with their occurrence and treatment. Today, gene therapy, once considered too risky, has become safer and can save the lives of patients with previously untreatable and lethal genetic diseases. However, the positive expectations from gene therapy are overshadowed by their extremely high prices. Thus, the duty of society in the provision of gene therapies has been frequently discussed. The discussions mainly focus on how to meet the genetic treatment needs of patients without violating the notion of justice and fairness in society. This study discusses the theoretical grounds for society's duty to compensate for genetic disease patients' disadvantages by providing them with appropriate genetic treatment. The main question is whether a fair and just system requires society to provide available lifesaving gene therapy to patients in need. The discussion is constructed on the crucial notion of the fair equal opportunity principle in a just system and the plausibility of including disadvantages emerging from bad luck in the natural lottery in the domain of justice.
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spelling pubmed-67143352019-09-13 Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy Ekmekci, PE Güner, MD Balkan J Med Genet Original Article Genetic diseases have been thought to be acquired as a result of sheer bad luck. However, recent advances in medical science have demonstrated the mechanisms of genetic disorders, which enable us to intervene with their occurrence and treatment. Today, gene therapy, once considered too risky, has become safer and can save the lives of patients with previously untreatable and lethal genetic diseases. However, the positive expectations from gene therapy are overshadowed by their extremely high prices. Thus, the duty of society in the provision of gene therapies has been frequently discussed. The discussions mainly focus on how to meet the genetic treatment needs of patients without violating the notion of justice and fairness in society. This study discusses the theoretical grounds for society's duty to compensate for genetic disease patients' disadvantages by providing them with appropriate genetic treatment. The main question is whether a fair and just system requires society to provide available lifesaving gene therapy to patients in need. The discussion is constructed on the crucial notion of the fair equal opportunity principle in a just system and the plausibility of including disadvantages emerging from bad luck in the natural lottery in the domain of justice. Sciendo 2019-08-28 /pmc/articles/PMC6714335/ /pubmed/31523623 http://dx.doi.org/10.2478/bjmg-2019-0008 Text en © 2019 Ekmekci PE, Güner MD, published by Sciendo http://creativecommons.org/licenses/by-nc-nd/3.0 This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
spellingShingle Original Article
Ekmekci, PE
Güner, MD
Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title_full Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title_fullStr Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title_full_unstemmed Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title_short Do Fair and Just Systems Require Compensation for the Disadvantages of the Natural Lottery? A Discussion on Society's Duties on the Provision of Gene Therapy
title_sort do fair and just systems require compensation for the disadvantages of the natural lottery? a discussion on society's duties on the provision of gene therapy
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6714335/
https://www.ncbi.nlm.nih.gov/pubmed/31523623
http://dx.doi.org/10.2478/bjmg-2019-0008
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