Cargando…
Ethical Issues Surrounding Newborn Screening
It would be difficult to overestimate the importance of persistent, thoughtful parents and their importance in the development of treatments for their children’s rare disorders. Almost a century ago in Norway, observant parents led a brilliant young physician-scientist to his discovery of the underl...
Autor principal: | |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2021
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7838989/ https://www.ncbi.nlm.nih.gov/pubmed/33435435 http://dx.doi.org/10.3390/ijns7010003 |
_version_ | 1783643306858643456 |
---|---|
author | Howell, R. Rodney |
author_facet | Howell, R. Rodney |
author_sort | Howell, R. Rodney |
collection | PubMed |
description | It would be difficult to overestimate the importance of persistent, thoughtful parents and their importance in the development of treatments for their children’s rare disorders. Almost a century ago in Norway, observant parents led a brilliant young physician-scientist to his discovery of the underlying cause of their children’s profound developmental delay—i.e., phenylketonuria, or PKU. Decades later, in a recovering war-ravaged Britain, an equally persistent mother pressed the scientists at Birmingham Children’s Hospital to find a way to treat her seriously damaged daughter, Sheila, who suffered from PKU. Living on the financial edge, this mother insisted that Bickel and colleagues develop such a diet, and she volunteered Sheila to be the patient in the trial. The scientists concluded that the low phenylalanine diet helped but needed to be started very early—so, newborn screening was born to permit the implementation of this. Many steps brought us to where we are today, but these courageous parents made it all begin. |
format | Online Article Text |
id | pubmed-7838989 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-78389892021-01-28 Ethical Issues Surrounding Newborn Screening Howell, R. Rodney Int J Neonatal Screen Commentary It would be difficult to overestimate the importance of persistent, thoughtful parents and their importance in the development of treatments for their children’s rare disorders. Almost a century ago in Norway, observant parents led a brilliant young physician-scientist to his discovery of the underlying cause of their children’s profound developmental delay—i.e., phenylketonuria, or PKU. Decades later, in a recovering war-ravaged Britain, an equally persistent mother pressed the scientists at Birmingham Children’s Hospital to find a way to treat her seriously damaged daughter, Sheila, who suffered from PKU. Living on the financial edge, this mother insisted that Bickel and colleagues develop such a diet, and she volunteered Sheila to be the patient in the trial. The scientists concluded that the low phenylalanine diet helped but needed to be started very early—so, newborn screening was born to permit the implementation of this. Many steps brought us to where we are today, but these courageous parents made it all begin. MDPI 2021-01-09 /pmc/articles/PMC7838989/ /pubmed/33435435 http://dx.doi.org/10.3390/ijns7010003 Text en © 2021 by the author. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Commentary Howell, R. Rodney Ethical Issues Surrounding Newborn Screening |
title | Ethical Issues Surrounding Newborn Screening |
title_full | Ethical Issues Surrounding Newborn Screening |
title_fullStr | Ethical Issues Surrounding Newborn Screening |
title_full_unstemmed | Ethical Issues Surrounding Newborn Screening |
title_short | Ethical Issues Surrounding Newborn Screening |
title_sort | ethical issues surrounding newborn screening |
topic | Commentary |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7838989/ https://www.ncbi.nlm.nih.gov/pubmed/33435435 http://dx.doi.org/10.3390/ijns7010003 |
work_keys_str_mv | AT howellrrodney ethicalissuessurroundingnewbornscreening |