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Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases

Purpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montrea... Full description

Journal Title: Journal of Medical Ethics 2014, Vol.40 (10), p.691-696
Main Author: Kleiderman, Erika
Other Authors: Knoppers, Bartha Maria , Fernandez, Conrad V , Boycott, Kym M , Ouellette, Gail , Wong-Rieger, Durhane , Adam, Shelin , Richer, Julie , Avard, Denise
Format: Electronic Article Electronic Article
Language: English
Subjects:
Quelle: Alma/SFX Local Collection
Publisher: England: BMJ Publishing Group
ID: ISSN: 0306-6800
Link: https://www.ncbi.nlm.nih.gov/pubmed/24356209
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title: Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
format: Article
creator:
  • Kleiderman, Erika
  • Knoppers, Bartha Maria
  • Fernandez, Conrad V
  • Boycott, Kym M
  • Ouellette, Gail
  • Wong-Rieger, Durhane
  • Adam, Shelin
  • Richer, Julie
  • Avard, Denise
subjects:
  • 1506
  • Adolescent
  • Adult
  • Bioethics
  • Child
  • Child health
  • Child, Preschool
  • Children
  • Childrens rights
  • Company business management
  • Female
  • Genetic research
  • Genetic Research - ethics
  • Genomics
  • Health aspects
  • Health attitudes
  • Humans
  • Incidental Findings
  • Male
  • Management
  • Medical genetics
  • Middle Aged
  • Parents
  • Parents - psychology
  • Pediatrics
  • Pediatrics - ethics
  • Physician and patient
  • Physician-patient relations
  • Rare diseases
  • Rare Diseases - diagnosis
  • Rare Diseases - psychology
  • Research Ethics
  • Sequencing
  • Social aspects
  • Young Adult
ispartof: Journal of Medical Ethics, 2014, Vol.40 (10), p.691-696
description: Purpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis. Results Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child's health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child's health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings. Conclusions Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 0306-6800
fulltext: fulltext
issn:
  • 0306-6800
  • 1473-4257
url: Link


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titleReturning incidental findings from genetic research to children: views of parents of children affected by rare diseases
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creatorKleiderman, Erika ; Knoppers, Bartha Maria ; Fernandez, Conrad V ; Boycott, Kym M ; Ouellette, Gail ; Wong-Rieger, Durhane ; Adam, Shelin ; Richer, Julie ; Avard, Denise
creatorcontribKleiderman, Erika ; Knoppers, Bartha Maria ; Fernandez, Conrad V ; Boycott, Kym M ; Ouellette, Gail ; Wong-Rieger, Durhane ; Adam, Shelin ; Richer, Julie ; Avard, Denise
descriptionPurpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis. Results Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child's health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child's health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings. Conclusions Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child.
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subject1506 ; Adolescent ; Adult ; Bioethics ; Child ; Child health ; Child, Preschool ; Children ; Childrens rights ; Company business management ; Female ; Genetic research ; Genetic Research - ethics ; Genomics ; Health aspects ; Health attitudes ; Humans ; Incidental Findings ; Male ; Management ; Medical genetics ; Middle Aged ; Parents ; Parents - psychology ; Pediatrics ; Pediatrics - ethics ; Physician and patient ; Physician-patient relations ; Rare diseases ; Rare Diseases - diagnosis ; Rare Diseases - psychology ; Research Ethics ; Sequencing ; Social aspects ; Young Adult
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7Richer, Julie
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descriptionPurpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis. Results Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child's health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child's health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings. Conclusions Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child.
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authorKleiderman, Erika ; Knoppers, Bartha Maria ; Fernandez, Conrad V ; Boycott, Kym M ; Ouellette, Gail ; Wong-Rieger, Durhane ; Adam, Shelin ; Richer, Julie ; Avard, Denise
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abstractPurpose To explore parental perceptions and experiences regarding the return of genomic incidental research findings in children with rare diseases. Methods Parents of children affected by various rare diseases were invited to participate in focus groups or individual telephone interviews in Montreal and Ottawa. Fifteen participants were interviewed and transcriptions were analysed using thematic analysis. Results Four emergent themes underscored parental enthusiasm for receiving incidental findings concerning their child's health: (1) right to information; (2) perceived benefits and risks; (3) communication practicalities: who, when, and how; and (4) service needs to promote the communication of incidental findings. Parents believed they should be made aware of all results pertaining to their child's health status, and that they are responsible for transmitting this information to their child, irrespective of disease severity. Despite potential negative consequences, respondents generally perceived a favourable risk-benefit ratio in receiving all incidental findings. Conclusions Understanding how parents assess the risks and benefits of returning incidental findings is essential to genomic research applications in paediatric medicine. The authors believe the study findings will contribute to establishing future best practices, although further research is needed to evaluate the impact of parental decisions on themselves and their child.
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