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Whose life is worth preserving? Disabled people and the expressivist objection to neonatology
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Boardman, Felicity K. Whose life is worth preserving? Disabled people and the expressivist objection to neonatology. Acta Paediatrica . doi:10.1111/apa.15336
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Official URL: https://doi.org/10.1111/apa.15336
Abstract
In an age of expansive genomic medicine, the findings of genetic sequencing techniques (whole genome/exome/mtDNA) are increasingly being factored into decisions about the treatment of critically ill neonates. Yet, such decisions remain highly ethically fraught (1). Neonatologists are generally familiar with the ethical complexity of such decisions, and the value judgements about 'worthwhile life' inherent within them. However, they are far less exposed to the views and life experiences of adults and families who currently live with genetic disabilities, many of whom live with the same conditions seen in neonatal intensive care, albeit in milder forms (e.g. SMA types II- IV). The insights of this group have much to offer an understanding of 'worthwhile life' in the context of treatment (and non-treatment) of critically ill babies, yet their voices are seldom heard within these debates. [Abstract copyright: This article is protected by copyright. All rights reserved.]
| Item Type: | Journal Article | ||||||||
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| Subjects: | H Social Sciences > HV Social pathology. Social and public welfare R Medicine > RB Pathology R Medicine > RJ Pediatrics |
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| Divisions: | Faculty of Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Medicine > Warwick Medical School |
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| SWORD Depositor: | Library Publications Router | ||||||||
| Library of Congress Subject Headings (LCSH): | Neonatology, Neonatology -- Moral and ethical aspects, Genetic disorders, Genetic screening, Genetic screening -- Moral and ethical aspects, People with disabilities | ||||||||
| Journal or Publication Title: | Acta Paediatrica | ||||||||
| Publisher: | Wiley-Blackwell Publishing Ltd. | ||||||||
| ISSN: | 0803-5253 | ||||||||
| Dates: |
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| Date of first compliant deposit: | 26 May 2020 | ||||||||
| DOI: | 10.1111/apa.15336 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Publisher Statement: | ** From PubMed via Jisc Publications Router | ||||||||
| Access rights to Published version: | Open Access | ||||||||
| RIOXX Funder/Project Grant: |
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