TY - JOUR
T1 - Whole genome sequencing in (recurrent) glioblastoma
T2 - challenges related to informed consent procedures and data sharing
AU - Hasner, Mira C
AU - van Opijnen, Mark P
AU - de Vos, Filip Y F
AU - Cuppen, Edwin
AU - Broekman, Marike L D
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/6/14
Y1 - 2024/6/14
N2 - 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.
AB - 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.
KW - Brain Neoplasms/genetics
KW - Glioblastoma/genetics
KW - Humans
KW - Information Dissemination/methods
KW - Informed Consent
KW - Neoplasm Recurrence, Local/genetics
KW - Whole Genome Sequencing
UR - http://www.scopus.com/inward/record.url?scp=85195918626&partnerID=8YFLogxK
U2 - 10.1007/s00701-024-06158-z
DO - 10.1007/s00701-024-06158-z
M3 - Review article
C2 - 38874628
SN - 0001-6268
VL - 166
JO - Acta Neurochirurgica
JF - Acta Neurochirurgica
IS - 1
M1 - 266
ER -