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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 the rights of persons with disabilities: Guidance

Office of the United Nations High Commissioner for Human Rights
April 2020

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This guidance aims to:

  • bring awareness of the pandemic’s impact on persons with disabilities and their rights;
  • draw attention to some promising practices already being undertaken around the world;
  • identify key actions for States and other stakeholders;
  • provide resources for further learning about ensuring rights based COVID-19 responses inclusive of persons with disabilities.

Topics are:

1. What is the impact of COVID-19 on the right to health of persons with disabilities

2. What is the impact of COVID-19 on persons with disabilities who are living in institutions

3. What is the impact of COVID-19 on the rights of persons with disabilities to live in the community

4. What is the impact of COVID-19 on work income and livelihood of persons with disabilities

5. What is the impact of COVID-19 on the right to education of persons with disabilities

6. What is the impact of COVID-19 on the right of persons with disabilities to protections from violence

7. What is the impact of COVID-19 on specific population groups in which persons with disabilities are overrepresented

Ethical approaches to gathering information from children and adolescents in international settings : guidelines and resources

SCHENK, Katie
WILLIAMSON, Jan
2005

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This publication was developed in response to the need for guidance in research activities involving children and adolescent with HIV/AIDS. It is aimed at project managers and researchers gathering information from and about children, and provides recommendations on how to avoid unintentional harm and how to safeguard the rights of vulnerable children during the process of data collection. Part 1 of this document presents some key principles and considerations that must be considered from the earliest stages of planning and throughout the information-gathering activity. Part 2 contains practical ethical guidelines, which are presented using a question-and-answer format. Part 3 summarizes the main recommendations and suggests roles for various staff members involved in information gathering activities with children and adolescents

Human subject regulations decision charts

OFFICE FOR HUMAN RESEARCH PROTECTIONS (OHRP)
September 2004

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These graphic aids are a guide to help decide if a research activity involving human subjects needs to be reviewed by an institutional review board (IRB) under the requirements of the US Department of Health and Human Services. The charts specify the following: whether an activity is research that must be reviewed by an IRB, whether the review may be performed by expedited procedures, and whether informed consent or its documentation may be waived. This document is useful for institutional review boards (IRBs), investigators, and others who are conducting research with human subjects

Alliance for human research protection

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This is the website of a national US network of lay people and professionals dedicated to advancing responsible and ethical medical research practices, to minimising the risks associated with such endeavours and to ensuring that the human rights, dignity and welfare of human subjects are protected. It contains updated news, relevant topic sections and a research database. Links to related resources are provided. This website is useful for people who are interested in ethical medical research issues in the United States

The Institutional Review Board - Discussion and News Forum

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The IRB Forum promotes the discussion of ethical, regulatory and policy concerns with human subjects research and this website contains updated news, events and resources, as well as links to related topics and sponsors. Individuals can register online to access the forum. The IRB Forum was previously known as "MCWIRB". This website is useful for people who are seeking information about ethical, regulatory and policy issues regarding human subjects research in the US

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