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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

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?

HAMILTON, C
2012

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Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

Part 46 : protection of human subjects

OFFICE FOR HUMAN RESEARCH PROTECTIONS (OHRP)
June 2005

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This policy regulations outline the basic US Health and Human Services Policy for Protection of Human Research Subjects. It also provides additional policy information about protection for pregnant women, human foetuses, neonates and children involved as subjects in research. This is an important document for anyone who is completing research with human research subjects in the United States

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

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