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E-book Ethics, conflict and medical treatment for children : From disagreement to dissensus

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Penilaian

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Shortly after three-o’clock on 28th July 2017, in a private room of a specialised hospice in suburban London, staffdisconnected the breathing machine that was keeping alive 11-month old infant, Charlie Gard. Lying on either side of him, his parents Connie Yates and Chris Gard held his hands, leaned close, and talked to him. They spoke to him of how proud they were of him. They saw him open his eyes briefly, and close them. Minutes later Charlie’s heart stopped, and he was gone.1This was the conclusion - quiet, private and fleeting, to a dispute about medical treatment that had been none of those things. In the preceding four months, a protracted series of court hearings around disputed treatment for Charlie Gard had yielded global media attention, and an outpouring of sympathy from onlookers around the world. It had attracted statements of support from many public figures, including US President Trump, and the Pope.Charlie’s parents had been seeking experimental treatment that might improve his rare genetic condition. Theyhad raised funds for him to travel to the US, where a medical specialist had offered to provide treatment. Many observers could not understand why the doctors at London’s Great Ormond Street Hospital opposed the requested treatment. Many found it hard to see why the UK and European courts2 had decided against Charlie’s parents and authorised withdrawal of life support.In the final stages of the court hearing, three days before he died, Chris and Connie Yates accepted the view of experts that medical treatment could no longer help him and it was time to allow him to die. Their own medical experts from overseas had examined Charlie and concluded that his condition was now too far advanced for experimental treatment to work. The family agreed to a plan to withdraw life support, though bitterly regretted what they perceived as a lost chance to help Charlie.But how had it reached this point? Where did the disagreement come from, and why had this decision been a matter for the court in the first place?In this first chapter, we will describe the background to the Charlie Gard case and how it played out over the firsthalf of 2017. We will look at how decisions about medical treatment are normally made and the role of the court in decisions. We will outline some of the important ethical questions raised by the Gard case, that will form the basis for the rest of this book. Charlie Gard was born, apparently healthy, in West London in August 2016. His parents, Chris and Connie, enjoyed a normal first few weeks with him at home. However, at a few weeks of age his parents started to notice that he wasn’t able to lift his head as well as other children, an early sign of muscle weakness. By a couple of months of age, he was losing weight and muscle strength, and Charlie was admitted to the specialist children’s hospital at Great Ormond St where soon afterwards he was put on a breathing machine in intensive care because he was not strong enough to breathe for himself. Doctors suspected that he had a genetic condition affecting his muscles and brain. A biopsy of his muscle, and later on, whole genome sequencing, identified the cause as an extremely rare condition with a long technical medical name: “infantile onset encephalomyopathic mitochondrial DNA depletion syndrome” (‘MDDS’ for short).There are a number of genetic disorders that can cause worsening muscle weakness in babies. Some of these are problems with the structure of muscles. Others are problems with nerves, nerve signals or the brain.MDDS is a condition that affects the basic energy structures of the body, the mitochondria. Mitochondria are found in most cells in the human body. There are several hundred in each human cell, and perhaps as many as 10 quadrillion in the whole human body. The energy released by these mitochondria fuels much of the activity of cells. They are often compared to batteries, but mitochondria are much more complicated than batteries. One little-known feature is that they contain their own genetic material or DNA. One theory is that they were originally bacteria captured by our primitive ancestor cells. Mitochondrial DNA is separate from the main chromosomes that we inherit from our parents (which live in the nucleus of the cell). It is much smaller than nuclear DNA. Nevertheless, these mitochondrial genes have essential roles in energy production and in regulating other important cellular processes.Normally, mitochondria are continuously making more mitochondrial DNA. They do this by synthesising and by recycling the basic building blocks of DNA (nucleosides) and then assembling them in a way that copies the existing mitochondrial genes (“replication”). This continuous process of replicating mitochondrial DNA is essential for the mitochondria to work properly. In some very rare genetic conditions, however, there are mistakes (mutations) in the instructions that tell the cells how to make the mitochondrial DNA building blocks or in how to put them together. This leads to the cells having much lower amounts of mitochondrial DNA than normal – this is the problem that affected Charlie Gard.

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Ketersediaan

Informasi Detail

Judul Seri

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No. Panggil

174.2 WIL e

Penerbit

London : Elsevier., 2018

Deskripsi Fisik

180 hlm

Bahasa

English

ISBN/ISSN

9780702077838

Klasifikasi

174.2

Tipe Isi

text

Tipe Media

computer

Tipe Pembawa

online resource

Edisi

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Subjek

Medical Ethics Professions

Info Detail Spesifik

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Pernyataan Tanggungjawab

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Versi lain/terkait

Lampiran Berkas

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