Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.
Document Type
Article
Publication Date
6-1-2019
Abstract
DNA is now commonly collected in clinical research either for immediate genomic analyses or stored for future studies. Many genomic studies were previously designed without awareness of the ethical issues that might arise regarding the disclosure of genomic test results. At the start of the Chronic Kidney Disease in Children (CKiD) Cohort Study in 2004, we did not foresee the advent of genomic technology or the associated ethical issues pertaining to genetic research in children. Recent genomic studies and ancillary proposals using genomic technology stimulated the CKiD investigators to reassess the current ethical and policy environment pertaining to genomic testing and results disclosure. We consider the issues pertaining to next generation sequencing and individual results disclosure that may guide current and future research practices.
Publisher
W.B. Saunders
Publication Title
American journal of kidney diseases : the official journal of the National Kidney Foundation
ISSN
1523-6838
Volume
73
Issue
6
First Page
837
Last Page
845
Recommended Citation
Wong, Craig S; Amy J Kogon; Bradley A Warady; Susan L Furth; John D Lantos; and Benjamin S Wilfond.
"Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.."
American journal of kidney diseases : the official journal of the National Kidney Foundation
