Genome sharing projects around the world: how you find data for your research

Abstract

Access to raw experimental research data and data reuse is a common hurdle in scientific research. Despite the mounting requirements from funding agencies that the raw data is deposited as soon as (or even before) the paper is published, multiple factors often prevent data from being accessed and reused by other researchers. The situation with the human genomic data is even more dramatic, since on the one hand human genomic data is probably the most important data to share - it lies at the heart of efforts to combat major health issues such as cancer, genetic diseases, and genetic predispositions for complex diseases like heart disease and diabetes. On the other hand, since it is sensitive and personal information, it is often exempt from data sharing requirements. DNAdigest investigates the barriers for ethical and efficient genomic data sharing and engages with all stakeholder groups, including researchers, librarians, data managers, software developers, policy makers, and the general public interested in genomics. Repositive offers services and tools that reduce the barriers for data access and reuse for the research community in academia, industry, and clinics. To address the most pressing problem for public genomic data: that of data discoverability, Repositive has built an online platform (repositive.io) providing a single point of entry to find and access available genomic research data.