Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing.
Acta Neurochir (Wien)
; 166(1): 266, 2024 Jun 14.
Article
em En
| MEDLINE
| ID: mdl-38874628
ABSTRACT
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.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Neoplasias Encefálicas
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Glioblastoma
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Disseminação de Informação
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Sequenciamento Completo do Genoma
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Consentimento Livre e Esclarecido
Limite:
Humans
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article