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Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

COVID-19 and Humanitarian Crisis

2020

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A COVID-19 Humanitarian platform to gather, curate, analyze, interpret and disseminate COVID-19-specific and -sensitive interventions that are being implemented in a variety of humanitarian settings.

The goal is to facilitate the sharing of context-specific field experiences about how humanitarian programs are responding to and being adapted to the COVID-19 pandemic. This website will host both technical guidelines as well as operational field experiences from humanitarian actors in different settings.

Coronavirus (COVID-19): Evidence Collection

EVIDENCE AID
2020

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The COVID-19 (Coronavirus) pandemic is leading to a rapidly expanding and evolving literature. Evidence Aid is preparing summaries of relevant research, which are available below in English with links to translations in other languages. 

 

  • Clinical characterization and management
  • Epidemiology
  • Ethical considerations
  • Health systems and services
  • Infection prevention and control, including health care workers’ protection
  • Public health interventions
  • Research & Development: Therapeutics and Vaccines
  • Social science in the response

Disability and gender analysis toolkit

THOMSON, Teresa
et al
March 2020

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CBM’s Disability and Gender Analysis Toolkit has been developed to support staff, partners and allies in strengthening capacity to address systemic and deeply entrenched discriminatory practices and specifically to meet their Programme Quality Standards. It provides practical tools for stronger disability and gender analysis to inform planning, practice and systems. The toolkit provides practical assessment templates and guidance for individuals, organisations and programmes to identify strengths and gaps and to develop focussed action plans to improve practice.

Agenda for Humanity

OCHA
2020

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The Agenda for Humanity sets out five major areas for action and change, the 5 Core Responsibilities, that are needed to address and reduce humanitarian need, risk and vulnerability, and 24 key transformations that will help achieve them.

Paediatric blast injury field manual

THE PAEDIATRIC BLAST INJURY PARTNERSHIP
2019

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The Field Manual has been created to provide technical guidance for those with medical training.  It enables the user to adapt their knowledge to the treatment of severely injured children.  It has paediatric-specific sections on:

  • Pre-hospital care and transport
  • Damage control resuscitation, surgery and intensive care
  • Surgery (thoraco-abdominal, limb, burns)
  • Neurological injury
  • Ward care
  • Rehabilitation
  • Psychosocial support
  • Ethics and safeguarding

The Manual is also intended for use by anyone who is required to plan for the treatment of severely injured children, so they can see the resources, training and equipment that is required in a medical facility likely to receive blast injured children.

Precarious Bodies, Precarious Lives: Framing Disability in Alejandro González Iñárritu’s Cinema

GARRETT, Victoria
2019

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Alejandro González Iñárritu is a salient example of contemporary Latin American directors who portray sick or disabled bodies as a visual and affective shorthand for different forms of violence. This article explores the relationship between his signature intersecting plots that join seemingly disconnected social spheres in a shared precariousness and his portrayal of illness, injury, and disability to suggest the violence and inequality that underpin these connections. I argue that González Iñárritu’s films frequently represent injured and disabled bodies to expose invisible connections that make social injustice possible as evidence of his using film as a political or ethical intervention that might erode the way contemporary global capitalism reproduces coloniality in everyday life. At the same time, his films illustrate the pitfalls of utilizing disabled bodies to realize this critique, thus shedding light on the ethical dimensions of this tendency to link disability with a critique of violence.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Disability, Decoloniality, and Other-than-Humanist Ethics in Anzaldúan Thought

BOST, Suzanne
2019

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Gloria Anzaldúa’s writing has been read as decolonial based on her resistance to dominant national, racial, and cultural formations. This essay turns to unpublished documents from the Gloria Anzaldúa archive that are decolonial at a more fundamental level. In autobiographical writings about her own experiences with disability, as well as doodles and figure drawings, the alternate forms of human life that Anzaldúa depicts defy the logics of identification and differentiation that underlie colonial hierarchies. Refusing to fix bodies with labels, Anzaldúa accepted mystical encounters and inter-species minglings without judgment. She experienced her own disabling conditions (including a severe hormone imbalance and Type 1 diabetes) in the epistemological fold between medical diagnoses (which enforce the coloniality of power, knowledge, and being) and trans-corporeal perceptions that defy empirical analysis. I analyze the ways in which these more capacious ways of being resonate with recent developments in posthumanist theory and disability ethics.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Influence & ethics - Handicap International's analyses, alerts, debates and recommendations on policy and ethics.

HANDICAP INTERNATIONAL
2015

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Influence & Ethics is operated jointly for Handicap International by the Advocacy Team of the Federation and by Handicap International Foundation.

Its aim is to provide information on our advocacy messages and activities, and to promote a dialogue and share analyses and ideas on policies and ethical issues related to Handicap International three main fields of intervention: reduction of armed violence, inclusive development, effective and inclusive humanitarian response

Studies and research at Handicap International : promoting ethical data management

BRUS, Aude
September 2015

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This guide explains the importance of ethical data collection and management. Using Handicap International’s decades experience implementing projects and programmes globally, the report highlights the impact of data collection and the importance of implementing ethical approaches in a variety of situations where data is being collected. It aims to raise the awareness of Handicap International’s operational and technical staff and their partners to the ethical questions to be considered when managing data (preparation, collection, processing, analysis and sharing of information). It reaffirms the ethical principles underpinning the organisation’s actions and concludes with eight ethical recommendations that are applicable to studies and/or research in our intervention settings

Moral wrongs, disadvantages, and disability : a critique of critical disability studies

VEHMAS, Simo
WATSON, Nick
November 2013

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This paper offers a review of Critical disability studies (CDS), an approach which challenges the predominantly materialist outlook of more conventional approaches to the study of disability. The paper “reviews the ideas behind the development of CDS and analyses and critiques some of its key ideas. Starting with a brief overview of the main theorists and approaches contained within CDS, the paper then moves on to normative issues; namely, to the ethical and political applicability of CDS”
Disability & Society, Volume 29, Issue 4

Human rights indicators : a guide to measurement and implementation

OFFICE OF THE UNITED NATIONS HIGH COMMISSIONER FOR HUMAN RIGHTS (OHCHR)
2012

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This guide is "a reference resource with operational tools, including an approach to identifying quantitative and qualitative indicators, and the corresponding methodology, to promote objective and comprehensive human rights assessments...The objective of this Guide is to bring together materials covering the conceptual, the methodological and the empirical aspects of the approach underlying the identification of context-sensitive indicators to promote and monitor the implementation of human rights. The Guide provides elements of a framework for building the capacity of human rights monitoring systems and facilitating the use of appropriate tools in policymaking, its implementation and monitoring (fig. I). The Guide aims to reach all those who share a commitment to the promotion of human rights and those who are mandated, directly or indirectly, to address human rights issues in the course of their day-to-day work"
HR/PUB/12/5

Paying stories of impairment - parasitic or ethical?|Reflections undertaking anthropological research in post-conflict Sierra Leone

BERGHS, Maria
December 2011

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This article presents ethnographic research in Sierra Leone with people with disabilities. The author explores challenges faced with the research and the importance of engaging in more reciprocal and collaborative communal research using a social model of disability framework to try and access discourses
Journal of Disability Research, Vol 3, No 4

Genocide by denial : how profiteering from HIV/AIDS killed millions

MUGYENYI, Peter
2008

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This open access book charts the spread of AIDS and its impact on people in villages in Uganda, sub-Saharan Africa and the rest of the world and the unnecessary numbers of deaths, particularly among poor people that it has caused. It also looks at the campaign to gain universal access to anti-retroviral therapy and the limited level of response from the rich world. The author challenges pharmaceutical companies to develop more ethical and humanitarian ways to trade, involving crucial life-saving drugs, and calls for a new world order to ensure entitlement of the poor to rapid humanitarian relief

The medical peace work textbook

ROWSON, M
MELF, K
Eds
2008

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This textbook provides an introduction to medical peace work and includes chapters relating to human rights; the causes and health effects of war and violent conflict; how health workers can promote peace-building and reconstruction; and the health and well-being needs of refugees and immigrants. The book is aimed at doctors, nurses, public health workers and other health professionals, and students. This e-textbook is part of an online course on Medical Peace Work. The book can be consulted, downloaded, or printed for free without registering for the course

Social enterprise as market regulation : non-governmental interventions in essential medicines wholesaling to low income countries

MACKINTOSH, Maureen
2008

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"This paper explores the under-studied role of social enterprise as traders and regulatory actors in the international wholesale markets for essential medicines and their impact on accessibility, quality and prices in these perverse markets, drawing on an interview survey of European-based socially oriented wholesalers supplying the medicines market for sub-Saharan Africa. The paper argues that these enterprises play an important role in regulating price and quality and hence in improving access to medicines by the poor. However they face challenging market and political conditions. The paper analyses the motivations and organisational structures that sustain social and ethical commitment in this market, drawing on theories of social enterprise and non-profit business, and surveys the challenges and constraints. It then examines the formal international and national regulatory interventions in the international markets and their effects on social enterprise, in the context of a substantial institutional divide between the medicines-related campaigning of the large international NGOs and the activities of these market-oriented social enterprises"

An ethical agenda in disability research : rhetoric or reality?

BARNES, Colin
2008

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This chapter reviews "key issues in the emergence of emancipatory disability research with particular reference to the British literature. It begins with a brief discussion of research ethics in relation to the emergent critique of traditional ways of researching disability, particularly its theoretical standpoint and the disempowering role of research experts. Second, attention centres on the key features of ethical or emancipatory disability research in line with a social model framework. This stresses an avowed commitment to the empowerment of disabled people through a process of political and social change while also informing the process of doing disability research. The third section addresses claims that the emphasis on political partiality deflects attention away from important debates about the choice of methodology and data collection strategies, and their implementation when undertaking disability research"
Note: This is the penultimate draft of an article that appears in: Mertens, D. M. and Ginsberg P. E.(eds.) 2008: The Handbook of Social Research Ethics, London: Sage, pp. 458-473

Disability and deafness, in the context of religion, spirituality, belief and morality, in Middle Eastern, south Asian and east Asian histories and cultures : annotated bibliography

MILES, M
July 2007

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This bibliography introduces and lists 450 resources, across the beliefs, religions and cultures of the Middle East and much of Asia, from antiquity to the present. More specifically, it annotates modern and historical materials in translation, that are relevant to disability, mental health issues and deafness.It would be useful for anyone interested in religion and culture as they relate to disability in society

Measuring transparency in medicines registration, selection and procurement : four country assessment studies

BAGHDADI-SABETI, Guitelle
WONDEMAGEGNEHU, Eshetu
2006

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This report summarises the findings of the transparency assessments carried out in the first four countries participating in the WHO-initiated Good Governance for Medicines Project, which offers a technical support package for tackling unethical issues in the public pharmaceutical sector. It provides a comprehensive picture of the level of transparency and potential vulnerability to corruption in three essential functions of the public pharmaceutical sector - registration, selection and procurement of medicines. The methodology provides both qualitative and quantitative information. In each country two national investigators collected data, conducting a series of interviews with carefully selected key informants

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