Data access arrangements in genomic research consortia

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 different access arrangements were identified, including four simple forms (open, consortium, managed and registered access) and eight more complex tiered forms (for example, a combination of consortium, managed and open access). The majority of consortia utilised some form of tiered access, often following the policy requirements of funders like the US National Institutes of Health and the UK Wellcome Trust. It was not always easy to precisely identify the access arrangements of individual consortia. Greater consistency, clarity and transparency is likely to be of benefit to donors, depositors and accessors alike. More work needs to be done to achieve this end.