Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing.
Cognitive impairment
Data sharing
Informed consent
Recurrent glioblastoma
Whole genome sequencing
Journal
Acta neurochirurgica
ISSN: 0942-0940
Titre abrégé: Acta Neurochir (Wien)
Pays: Austria
ID NLM: 0151000
Informations de publication
Date de publication:
14 Jun 2024
14 Jun 2024
Historique:
received:
18
03
2024
accepted:
04
06
2024
medline:
14
6
2024
pubmed:
14
6
2024
entrez:
14
6
2024
Statut:
epublish
Résumé
Increased use of whole genome sequencing (WGS) in neuro-oncology for diagnostics and research purposes necessitates a renewed conversation about informed consent procedures and governance structures for sharing personal health data. There is currently no consensus on how to obtain informed consent for WGS in this population. In this narrative review, we analyze the formats and contents of frameworks suggested in literature for WGS in oncology and assess their benefits and limitations. We discuss applicability, specific challenges, and legal context for patients with (recurrent) glioblastoma. This population is characterized by the rarity of the disease, extremely limited prognosis, and the correlation of the stage of the disease with cognitive abilities. Since this has implications for the informed consent procedure for WGS, we suggest that the content of informed consent should be tailor-made for (recurrent) glioblastoma patients.
Identifiants
pubmed: 38874628
doi: 10.1007/s00701-024-06158-z
pii: 10.1007/s00701-024-06158-z
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
266Informations de copyright
© 2024. The Author(s).
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