Autism, intellectual disability, and a challenge to our understanding of proxy consent

Med Health Care and Philos, 2016, 1-8
Author: Abraham Graber
“While disability rights activists have generally criticized mainstream bioethics from within the confines of competing theoretical orientations, consideration of disability can highlight inadequacies internal to the principlist framework. In what follows I will argue that, in an important range of cases, we lack a satisfactory account of informed consent for treating individuals with moderate and severe intellectual disabilities.”
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Autism doesn’t have to be viewed as a disability or disorder

The Guardian, 16 July 2015
Author: Nikki Stevenson
“Autism may represent the last great prejudice we, as a society, must overcome. History is riddled with examples of intolerance directed at the atypical. We can sometime fear that which diverges from the “norm”, and sometimes that fear leads us to frame those who are different as being in some way lesser beings than ourselves. But what about the strengths and abilities that can be found within the spectrum?”
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Five years in prison for ‘wilful neglect’

Nursing in Practice, AP, November 18, 2013

“Nurses who “wilfully neglect” patients could face five years in prison or a fine, the Prime Minister has announced.   Next week ministers will unveil plans for a new law covering “wilful or reckless neglect”.   The measures were recommended in Professor Don Berwick’s report, which was released following the Mid Staffordshire hospital scandal.   The sanctions will be based on the Mental Health Capacity Act, which protects vulnerable people from abuse.”

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Navigating the maze: ethics approval pathways for intellectual disability research

J Med Ethics Published Online 20 August 2013

Authors: Allyson Thomson, Peter Roberts, Alan Bittles

Introduction
All researchers, regardless of their discipline, need to be aware of the importance of protecting vulnerable populations, such as people with intellectual disabilities (ID), from exploitation within the context of research.1 ,2 For this reason, institutional Human Research Ethics Committees (HREC) are regarded as an essential gateway for review of the design and procedure of research projects involving people with ID. While these protections are welcome and necessary, it has been mooted that rigorous application of guidelines of ethical conduct may have a deleterious effect on ID research in Australia.3 One of the common themes identified by a recent review of the ethical aspects of ID research was the importance of participation, notwithstanding an often reduced capacity for autonomous decision making ‘…that neither the presence of a disability nor the absence of capacity should exclude an individual from participation and that the participation of adults with ID in all research should be pursued.’4…”

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