RT Journal Article
SR Electronic
T1 Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 691
OP 696
DO 10.1136/medethics-2013-101648
VO 40
IS 10
A1 Erika Kleiderman
A1 Bartha Maria Knoppers
A1 Conrad V Fernandez
A1 Kym M Boycott
A1 Gail Ouellette
A1 Durhane Wong-Rieger
A1 Shelin Adam
A1 Julie Richer
A1 Denise Avard
YR 2014
UL http://jme.bmj.com/content/40/10/691.abstract
AB 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.