domingo, 1 de noviembre de 2015

To disclose, or not to disclose? Context matters. - PubMed - NCBI

To disclose, or not to disclose? Context matters. - PubMed - NCBI



 2015 Mar;23(3):279-84. doi: 10.1038/ejhg.2014.108. Epub 2014 Jun 11.

To disclose, or not to disclose? Context matters.

Abstract

Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.

PMID:
 
24916647
 
[PubMed - indexed for MEDLINE] 
PMCID:
 
PMC4062531
 
Free PMC Article

No hay comentarios:

Publicar un comentario