Opinion No 91 - Access to Raw Data Generated by Whole Genome or Whole Exome Sequencing

Opinion No 91 of 22 June 2026 concerning access to raw data generated by whole genome sequencing or whole exome sequencing (WGS or WES)

In this opinion, the Committee examines the ethical, legal and societal issues related to patients’ access to raw data generated through whole genome sequencing (WGS) and whole exome sequencing (WES). The Committee recognises the importance of the right of individuals to access their own data, while emphasising that such raw genomic data cannot be equated with clinical information that is directly communicable or immediately understandable. Indeed, their meaning depends on a process of professional analysis, interpretation and contextualisation. The Committee also draws attention to the inherently familial and collective nature of genetic data, which may have implications for biological relatives. It therefore advocates a responsible framework for access to such data, balancing patient autonomy, the protection of the rights and interests of relatives, the quality of medical interpretation and the confidentiality of genetic information.

Opinion No 15 -  Impact of the "minimum clinical summary" (MCS)

Opinion No 15 of 18 February 2002 on the ethical questions relating to the impact of the "minimum clinical summary" (MCS) on the number of days patients spend in hospital