Data ownership in genomic research consortia.

ABSTRACT: Discourse around ownership of genomic sequence data has proliferated over recent years. There are likely to be few people who don't feel a degree of connectedness to their genomic data. The inclusion of individuals' genomic data in genomic datasets is critical to genomic research, and these datasets are most effective if shared widely. Genomic research consortia are an integral part of the genomic data sharing ecosystem, critical in facilitating data sharing among research groups. This article considers the property status of genomic data at various stages of the research life cycle, and the potential 'ownership' claims that may be made by various actors in data sharing networks. It does so by comparing the legal position with the findings of a study that examined policy documents and guid

SUBMITTER: Nielsen J 

PROVIDER: S-EPMC11630733 | biostudies-literature | 2024 Jul-Dec

REPOSITORIES: biostudies-literature