Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.

ABSTRACT: Whole genome/exome sequencing (WGS/WES) has become widely adopted in research and, more recently, in clinical settings. Many hope that the information obtained from the interpretation of these data will have medical benefits for patients and-in some cases-also their biological relatives. Because of the manifold possibilities to reuse genomic data, enabling sequenced individuals to access their own raw (uninterpreted) genomic data is a highly debated issue. This paper reports some of the first empirical findings on personal genome access policies and practices. We interviewed 39 respondents, working at 33 institutions in 21 countries across Europe. These sequencing institutions generate massive amounts of WGS/WES data and represent varying organisational structures and operational models. T

SUBMITTER: Narayanasamy S 

PROVIDER: S-EPMC7218066 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature