Julie Samuël, Nola M. Ries, David Malkin and Bartha Maria Knoppers
(2008) 6:3 GenEdit, 1-8
The inclusion of children in longitudinal research using biobanks raises specific ethical and legal issues. This article analyzes ethical frameworks concerning participation in biobanks and suggests that such frameworks, developed in the context of competent adults as research subjects, are not adapted for research involving children. It concludes that there is a need to elaborate guidelines speci...
Consortium Meeting
Organized by ENGAGE
Date : May 31-1, 2010
Location : Helsinki, Finland.
Information :URL
Increasingly, children participate in genetic research studies. The goal is to better understand the interaction between genes, the influence of the environment on genes and the causes of infantile diseases. Such knowledge will help researchers to better understand health and disease and to develop effective treatments, cures or pain relief. Currently, genetics is already used in clinical contexts involving children via genetic testing and genetic screening. The research and clinical applications of genetics and genomics involving children raise specific issues. Children until maturity are considered incapable of providing consent. In order to not deprive them from their right to benefit from genetic progress, norms relevant to research with children recognize the need for their inclusion while ensuring their protection. PediaGen presents a listing of the international, regional and national laws, norms, guidelines and policies relevant to both genetic research and their clinical applications involving children and minors, as well as a selective review of literature. The policies, norms, laws and literature entered in PediaGen are grouped under 6 themes. For your convenience, each theme encompasses several subcategories: |
||||||
|