Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.
Huntington's disease
adolescents
communication
ethics
family communication
hereditary cancer
parents
pediatrics
Journal
Journal of genetic counseling
ISSN: 1573-3599
Titre abrégé: J Genet Couns
Pays: United States
ID NLM: 9206865
Informations de publication
Date de publication:
02 2021
02 2021
Historique:
received:
28
06
2019
revised:
14
06
2019
accepted:
22
06
2019
pubmed:
24
7
2020
medline:
16
10
2021
entrez:
24
7
2020
Statut:
ppublish
Résumé
Genetic test results are often relevant not only to persons tested, but also to their children. Questions of whether, when, and how to disclose parental test results to children, particularly minors, can be difficult for parents to navigate. Currently, limited data are available on these questions from the perspective of minors. In this qualitative study, semi-structured interviews were conducted with parents affected by or at risk for hereditary cancer (N = 17) or Huntington's disease (N = 14) and their mature minor children aged 15-17 (N = 34). Parents and mature minors were interviewed separately. Genetic counselors (GCs; N = 19) were also interviewed. Most parents interviewed wanted to protect minors from genetic risk information (GRI) and feared minors would not be able to handle GRI. However, most mature minors reported they did not receive enough information and wished their parent was more forthcoming. Parents recommended taking time to process one's own test results before communicating with minors, and mature minors recommended parents communicate GRI in an honest, hopeful way. Most parents and GCs felt additional resources on communicating with minors about GRI and various genetic conditions are needed. This study includes the experiences and perspectives of a well-informed cohort, and results should be taken into careful consideration by parents, GCs, and others who are faced with communicating GRI to minors.
Identifiants
pubmed: 32700788
doi: 10.1002/jgc4.1314
pmc: PMC8564942
mid: NIHMS1634963
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
237-245Subventions
Organisme : NHGRI NIH HHS
ID : R01 HG008045
Pays : United States
Organisme : NIGMS NIH HHS
ID : T32 GM007814
Pays : United States
Informations de copyright
© 2020 National Society of Genetic Counselors.
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