The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository

Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned. We conducted focus groups w...

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Bibliographic Details
Published in:Genetics in medicine 2012-03, Vol.14 (3), p.330-337
Main Authors: Harris, Erin D, Ziniel, Sonja I, Amatruda, Jonathan G, Clinton, Catherine M, Savage, Sarah K, Taylor, Patrick L, Huntington, Noelle L, Green, Robert C, Holm, Ingrid A
Format: Article
Language:English
Subjects:
Adolescent
Adult
Attitude to Health
Biological Specimen Banks
Child
Child, Preschool
Culture
Female
Focus Groups
Genetic Research - ethics
Humans
Male
Middle Aged
Motivation
Parents & parenting
Parents - psychology
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Summary:Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned. We conducted focus groups with parents of children with developmental disorders enrolled in the Gene Partnership (GP), a genomic research repository that offers to return IRRs, to learn about their understanding of the GP, motivations for enrolling their children, and expectations regarding the return of IRRs. Parents hoped to receive IRRs that would help them better understand their children's condition(s). They understood that this outcome was unlikely, but hoped that their children's participation in the GP would contribute to scientific knowledge. Most parents wanted to receive all IRRs about their child, even for diseases that were severe and untreatable, citing reasons of personal utility. Parents preferred electronic delivery of the results and wanted to designate their preferences regarding what information they would receive. It is important for researchers to understand participant expectations in enrolling in a research repository that offers to disclose children's IRRs in order to effectively communicate the implications to parents during the consenting process.
ISSN:1098-3600
1530-0366
DOI:10.1038/gim.2011.25