The development of a preference-setting model for the return of individual genomic research results.
J Empir Res Hum Res Ethics
; 10(2): 107-20, 2015 Apr.
Article
em En
| MEDLINE
| ID: mdl-25742675
ABSTRACT
Understanding participants' preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Pais
/
Bancos de Espécimes Biológicos
/
Predisposição Genética para Doença
/
Genômica
/
Revelação
/
Tomada de Decisões
/
Consentimento Livre e Esclarecido
Tipo de estudo:
Prognostic_studies
Limite:
Adult
/
Child
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Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Revista:
J Empir Res Hum Res Ethics
Assunto da revista:
ETICA
Ano de publicação:
2015
Tipo de documento:
Article
País de afiliação:
Estados Unidos