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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.

Research for all: making research inclusive of people with disabilities

CBM-NOSSAL PARTNERSHIP FOR DISABILITY INCLUSIVE DEVELOPMENT
RESEARCH FOR DEVELOPMENT IMPACT NETWORK
July 2020

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Developing programs to be inclusive of people with disabilities ensures that all people benefit. Acknowledging and understanding the lived experiences of people with disabilities is essential in changing the paradigm that development programs ‘do to’ or ‘do for’ a specific vulnerable and marginalised portion of the community. It addresses issues of equity and of development effectiveness.

 

This guidance provides tools and resources for practitioners, researchers and policymakers for any and all forms of research, or evaluation with human participants, to ensure best-practice. This guide is for ensuring that all people with disabilities within the population or community are not excluded (either purposefully or accidentally, through poor planning or inexperience) in doing development research or evaluation. The guide is not specifically designed for those doing research or projects solely focusing on people with disabilities.

 

This guide is divided into three sections for addressing and implementing good practice in development research.

 

Section One sets out the fundamental principles and ethical considerations of disability-inclusive development (DID) research. This includes an overview of the rights-based approach to disability, and its guidance in shaping development.
Section Two discusses the ethical considerations for designing inclusive research questions and methods, including when working with children with disabilities. This involves enabling and obtaining informed consent.
Section Three details the key steps and processes for ethically involving people with disabilities throughout the four main phases of the research process: planning, design, implementation, and dissemination.

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

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

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