Publication: The Data Use Ontology...Biomedical Datasets

I was a contributor to this work and am recognized as an author on the related publication.

Human biomedical datasets that are critical for research and clinical studies to benefit human health also often contain sensitive or potentially identifying information of individual participants. Thus, care must be taken when they are processed and made available to comply with ethical and regulatory frameworks and informed consent data conditions. To enable and streamline data access for these biomedical datasets, the Global Alliance for Genomics and Health (GA4GH) Data Use and Researcher Identities (DURI) work stream developed and approved the Data Use Ontology (DUO) standard. DUO is a hierarchical vocabulary of human and machine-readable data use terms that consistently and unambiguously represents a dataset’s allowable data uses. DUO has been implemented by major international stakeholders such as the Broad and Sanger Institutes and is currently used in annotation of over 200,000 datasets worldwide. Using DUO in data management and access facilitates researchers’ discovery and access of relevant datasets. DUO annotations increase the FAIRness of datasets and support data linkages using common data use profiles when integrating the data for secondary analyses. DUO is implemented in the Web Ontology Language (OWL) and, to increase community awareness and engagement, hosted in an open, centralized GitHub repository. DUO, together with the GA4GH Passport standard, offers a new, efficient, and streamlined data authorization and access framework that has enabled increased sharing of biomedical datasets worldwide.

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About My Involvement in GA4GH

I have been an active volunteer member of the Global Alliance for Genomic Health (GA4GH) since late 2018. This organization was established in 2013 to accelerate the potential of research and medicine to advance human health. Their approach is to bring together 500+ leading organizations working in healthcare, research, patient advocacy, life science, and information technology to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data.

I originally participated on behalf of ORCID as a member of the Data Use & Research Identities (DURI) Workstream which is writing standards to identify and verify the researchers that access genomics datasets and ensure accurate models for assessing data use. In 2019, I assumed the role as co-chair of the Equity, Diversity & Inclusion Advisory Group. This team is focused on ensuring diversity and inclusion among the volunteer membership the creates and contributes to GA4GH’s standards and policies with the goal of ensuring global equity for the use of these standards.

In addition to leading the EDI work for the organization, I am a frequent speaker, writer, and contributor to GA4GH work, and serve on the GA4GH Steering Committee.