alexa Influence of Demographic Characteristics of Participants on Consent to Genomic Research into Congenital Heart Disease | OMICS International | Abstract
ISSN: 2155-9627

Journal of Clinical Research & Bioethics
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Research Article

Influence of Demographic Characteristics of Participants on Consent to Genomic Research into Congenital Heart Disease

Charles Dupras1, Gregor Andelfinger2, Michèle Paré3, Maryse Thibeault2 and Béatrice Godard1*

1Omics-Ethics Research Group, Department of social and preventive medicine, Public Health School, University of Montreal, Montréal QC, Canada

2Research Center, Sainte-Justine Hospital, University of Montreal QC, Canada

3Research Institute of Public Health, University of Montreal QC, Canada

*Corresponding Author:
Béatrice Godard
University of Montreal
Succursale Centre-Ville Montreal QC, Canada
Tel: 1 514 343 6111 (#44036)
Fax: 1 514 343 5646
E-mail: [email protected]

Received date: August 25, 2014; Accepted date: October 30, 2014; Published date: November 02, 2014

Citation: Dupras C, Andelfinger G, Paré M, Thibeault M, Godard B (2014) Influence of Demographic Characteristics of Participants on Consent to Genomic Research into Congenital Heart Disease. J Clinic Res Bioeth 5:199. doi:10.4172/2155-9627.1000199

Copyright: © 2014 Dupras C, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abstract

Background: The enrollment of sick children and their families in genomics studies calls for a comprehensive view of the consent process. Few studies have searched for correlations between the demographic characteristics of participants (age, gender, parental lineage) or their level of participation (affected children, parents, or other relatives), on the one hand, and patterns of consent to specific pediatric research procedures, on the other (DNA banking, use of cardiac tissue, disclosure of a cardiac condition, creation of cell lines, recall of a participant).
Objectives: This study sought to analyze the extent to which respondents participation in genomic research into congenital heart disease, based on their consent to specific procedures, revealed patterns correlated with their demographic data. Methods and findings: Data were abstracted from consent forms obtained from 600 participants enrolled in a research project on the genomics of congenital heart disease.
Results: Our analysis revealed significant patterns between demographic characteristics and willingness to consent to various aspects of genomic research into congenital heart disease.
Conclusions: Participant heterogeneity needs to be considered by clinical researchers in order to identify specific sub-groups of participants who may require more attention for improving the recruitment and retention in genomic research into congenital heart disease, as well as the consent process.

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