Researching Disabled Children: Abundant Caution Does No Harm?
Developmental Medicine & Child Neurology, Vol. 51, No. 3, June 2009
Posted: 11 Jun 2009 Last revised: 1 Jul 2009
Date Written: June 4, 2009
Objective: To describe the ethical challenges in research involving disabled children, and suggest that protections from potential harms of inclusion must be balanced by careful consideration of the potential harms of exclusion.
Summary: Perhaps the biggest challenge facing the research ethics and pediatric medical research communities is the delicate balance between the need to include children in research and the countervailing need to protect them from its harms. The current paradigm for ethical research involving children rightly emphasizes the need for protecting these vulnerable subjects from harm. In the US, federal regulations delineate the kinds of research in which vulnerable persons – including both children and disabled persons - can be included. Importantly, the regulations require that potential risks to individual subjects must be reasonable in relation to the anticipated benefits and the importance of the knowledge expected to be gained from the research. When children who are also disabled are research subjects, additional protections are required; since disabled children are in some sense "doubly vulnerable." However, it is also important to consider the extent to which measures intended to protect these subjects from potential harms may effectively preclude their participation in research that might benefit them or provide important information about their disabilities.
Conclusion: The inclusion of disabled children in clinical research must be based on measured and careful evaluations of potential risks and benefits. However, equally important is consideration of the potential harms of protecting these "doubly vulnerable" subjects out of participation in potentially important and beneficial research.
Keywords: Research, children, disabilitites, ethics
JEL Classification: I1-I112
Suggested Citation: Suggested Citation