Do research participants share genomic screening results with family members?
cascade testing
communication
family
population screening
predictive genetic testing
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:
04 2022
04 2022
Historique:
revised:
30
08
2021
received:
23
01
2021
accepted:
04
09
2021
pubmed:
20
10
2021
medline:
6
4
2022
entrez:
19
10
2021
Statut:
ppublish
Résumé
The public health impact of genomic screening can be enhanced by cascade testing. However, cascade testing depends on communication of results to family members. While the barriers and facilitators of family communication have been researched following clinical genetic testing, the factors impacting the dissemination of genomic screening results are unknown. Using the pragmatic Electronic Medical Records and Genomics Network-3 (eMERGE-3) study, we explored the reported sharing practices of participants who underwent genomic screening across the United States. Six eMERGE-3 sites returned genomic screening results for mostly dominant medically actionable disorders and surveyed adult participants regarding communication of results with first-degree relatives. Across the sites, 279 participants completed a 1-month and/or 6-month post-results survey. By 6 months, only 34% of the 156 respondents shared their results with all first-degree relatives and 4% did not share with any. Over a third (39%) first-degree relatives were not notified of the results. Half (53%) of participants who received their results from a genetics provider shared them with all first-degree relatives compared with 11% of participants who received their results from a non-genetics provider. The most frequent reasons for sharing were a feeling of obligation (72%) and that the information could help family members make medical decisions (72%). The most common reasons indicated for not sharing were that the family members were too young (38%), or they were not in contact (25%) or not close to them (25%). These data indicate that the professional returning the results may impact sharing patterns, suggesting that there is a need to continue to educate healthcare providers regarding approaches to facilitate sharing of genetic results within families. Finally, these data suggest that interventions to increase sharing may be universally effective regardless of the origin of the genetic result.
Identifiants
pubmed: 34665896
doi: 10.1002/jgc4.1511
pmc: PMC8983417
mid: NIHMS1777594
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
447-458Subventions
Organisme : NHGRI NIH HHS
ID : U01 HG008676
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG011172
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008657
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008672
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008684
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008679
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008666
Pays : United States
Organisme : NIMHD NIH HHS
ID : U54 MD007593
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008680
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008673
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008685
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG006379
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008664
Pays : United States
Organisme : NHGRI NIH HHS
ID : U01 HG008701
Pays : United States
Informations de copyright
© 2021 National Society of Genetic Counselors.
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