Regulatory and Ethical Principles in Research Involving Children and Individuals with Developmental Disabilities

Children and individuals with developmental disabilities (DD) compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical...

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Bibliographic Details
Published in:Ethics & behavior 2004-01, Vol.14 (1), p.31-49
Main Authors: Yan, Eric G., Munir, Kerim M.
Format: Article
Language:English
Subjects:
Adult
Beneficence
Biomedical Research - ethics
Child
Developmental Disabilities
Developmentally disabled children
Ethical aspects
Ethics Committees, Research
Ethics, Research
Guidelines as Topic
Helsinki Declaration
Human Experimentation - ethics
Human Experimentation - standards
Human Rights
Humans
Informed Consent
Internationality
Personal Autonomy
Regulation
Research Design
Risk management
Social Justice
Vulnerable Populations
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Summary:Children and individuals with developmental disabilities (DD) compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit from research by equitable participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy.
ISSN:1050-8422
1532-7019
DOI:10.1207/s15327019eb1401_3