Regulatory and Ethical Principles in Research Involving Children and Individuals with Developmental Disabilities
Overview
Authors
Affiliations
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.
(Epistemic) Injustice and Resistance in Canadian Research Ethics Governance.
Clairmont S, Doerksen E, Gunay A, Friesen P Ethics Hum Res. 2025; 47(1):2-19.
PMID: 39749365 PMC: 11696195. DOI: 10.1002/eahr.60004.
Salayev K, Aslanova U, Munir K J Empir Res Hum Res Ethics. 2023; 19(1-2):28-36.
PMID: 38073174 PMC: 10957319. DOI: 10.1177/15562646231219384.
Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review.
Mezinska S, Gallagher L, Verbrugge M, Bunnik E Hum Genomics. 2021; 15(1):16.
PMID: 33712057 PMC: 7953558. DOI: 10.1186/s40246-021-00317-4.
McCormack L, Wylie A, Moultrie R, Furberg R, Wheeler A, Treiman K PLoS One. 2019; 14(10):e0223801.
PMID: 31644588 PMC: 6808417. DOI: 10.1371/journal.pone.0223801.
Singh S, Tuomainen H, de Girolamo G, Maras A, Santosh P, McNicholas F BMJ Open. 2017; 7(10):e016055.
PMID: 29042376 PMC: 5652531. DOI: 10.1136/bmjopen-2017-016055.