Hope, but never expect? Comparing parents' pre- and post-disclosure attitudes toward return of results from diagnostic exome sequencing for their child.
Mol Genet Genomic Med
; 12(3): e2341, 2024 Mar.
Article
em En
| MEDLINE
| ID: mdl-38366804
ABSTRACT
BACKGROUND:
Counseling for whole-exome sequencing (WES) could benefit from aligning parents' pre- and post-disclosure attitudes. A few studies have qualitatively compared parents' pre- and post-disclosure attitudes toward receiving WES results for their child in a diagnostic setting. This study explored these attitudes in the context of children with a developmental delay.METHODS:
Semi-structured interviews were conducted with parents (n = 27) of 16 children undergoing diagnostic WES in trio-analysis, both before and after receiving results.RESULTS:
Three key insights emerged. First, the distinction between hoping and expecting was relevant for shaping parents' experiences with receiving results related to the primary indication. Second, parents of young children whose development of autonomous capacities was uncertain sometimes found themselves in a situation resembling a Catch-22 when confronted with decisions about unsolicited findings (UFs) an important reason for consenting to WES was to gain a better picture of how the child might develop, but in order to make responsible choices about UFs, some ideas of their child's development is needed. Third, default opt-ins and opt-outs helped parents fathom new kinds of considerations for accepting or declining UFs in different categories, thereby aiding decision-making.CONCLUSION:
Results from this study are relevant for counseling and policy development.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Atitude
/
Revelação
Limite:
Child
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Child, preschool
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Humans
Idioma:
En
Revista:
Mol Genet Genomic Med
/
Mol. genet. genomic med
/
Molecular genetics & genomic medicine
Ano de publicação:
2024
Tipo de documento:
Article
País de afiliação:
Holanda