Data access arrangements in genomic research consortia.

ABSTRACT: One of the most common terms that is used to describe entities responsible for sharing genomic data for research purposes is 'genomic research consortium'. However, there is a lack of clarity around the language used by consortia to describe their data sharing arrangements. Calls have been made for more uniform terminology. This article reports on a review of the genomic research consortium literature illustrating a wide diversity in the language that has been used over time to describe the access arrangements of these entities. The second component of this research involved an examination of publicly available information from a dataset of 98 consortia. This analysis further illustrates the wide diversity in the access arrangements adopted by genomic research consortia. A total of 12 diff

SUBMITTER: Nicol D 

PROVIDER: S-EPMC11408512 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature