Regulatory and ethical principles in research involving children and individuals with developmental disabilities
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Ethics and Behavior 14 (1):31 – 49 (2004)
Children and individuals with developmental disabilities 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
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Tom L. Beauchamp (2009). Principles of Biomedical Ethics. Oxford University Press.
Judith Jarvis Thomson (1976). Killing, Letting Die, and the Trolley Problem. The Monist 59 (2):204-217.
Robert J. Levine (1986). Ethics and Regulation of Clinical Research. Urban & Schwarzenberg.
Paul Ramsey (1970). The Patient as Person. New Haven,Yale University Press.
Nicholas Rescher (1969). Distributive Justice: A Constructive Critique of the Utilitarian Theory of Distribution. Philosophical Review 78 (2):265-268.
Citations of this work BETA
Bette Anton (1999). CQ Sources/Bibliography. Cambridge Quarterly of Healthcare Ethics 8 (4):348-350.
Bette Anton (2009). CQ Sources/Bibliography. Cambridge Quarterly of Healthcare Ethics 18 (2):155.
Similar books and articles
David Wendler (2012). A New Justification for Pediatric Research Without the Potential for Clinical Benefit. American Journal of Bioethics 12 (1):23 - 31.
Alexander Friedman, Emily Robbins & David Wendler (2012). Which Benefits of Research Participation Count as 'Direct'? Bioethics 26 (2):60-67.
Diane Scott-Jones (1994). Ethical Issues in Reporting and Referring in Research with Low-Income Minority Children. Ethics and Behavior 4 (2):97 – 108.
Lorraine Young & Hazel Barrett (2001). Ethics and Participation: Reflections on Research with Street Children. Ethics, Place and Environment 4 (2):130 – 134.
Peter C. Williams (1996). Ethical Principles in Federal Regulations: The Case of Children and Research Risks. Journal of Medicine and Philosophy 21 (2):169-186.
Paula Tallal (2002). Are Developmental Disabilities the Same in Children and Adults? Behavioral and Brain Sciences 25 (6):768-769.
Lois B. Oberlander (1995). Ethical Responsibilities in Child Custody Evaluations: Implications for Evaluation Methodology. Ethics and Behavior 5 (4):311 – 332.
Lizabeth A. Barclay & Karen S. Markel (2009). Ethical Fairness and Human Rights: The Treatment of Employees with Psychiatric Disabilities. [REVIEW] Journal of Business Ethics 85 (3):333 - 345.
Ana S. Iltis (2011). Justice, Fairness, and Membership in a Class: Conceptual Confusions and Moral Puzzles in the Regulation of Human Subjects Research. Journal of Law, Medicine & Ethics 39 (3):488-501.
Added to index2009-01-28
Total downloads9 ( #290,390 of 1,779,270 )
Recent downloads (6 months)1 ( #291,352 of 1,779,270 )
How can I increase my downloads?