Whole genome sequencing in (recurrent) glioblastoma: challenges related to informed consent procedures and data sharing

Mira C Hasner, Mark P van Opijnen*, Filip Y F de Vos, Edwin Cuppen, Marike L D Broekman

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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.

Original languageEnglish
Article number266
Number of pages8
JournalActa Neurochirurgica
Volume166
Issue number1
DOIs
Publication statusPublished - 14 Jun 2024

Keywords

  • Brain Neoplasms/genetics
  • Glioblastoma/genetics
  • Humans
  • Information Dissemination/methods
  • Informed Consent
  • Neoplasm Recurrence, Local/genetics
  • Whole Genome Sequencing

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