Publications

Through a collaboration with Laure Haak and Heather Flanagan, we explored case studies related to building trust in community-led efforts, including the key components in fueling adoption and use. I was an equal author contributor in this work. Trust is a core component of collaboration. Trust is a local phenomenon, and scientific research is a global collaborative, its impact multiplied through open exchange, communication and mobility of people and information. Given the diversity of participants, local policies and cultures, how can trust be established in and between research communities?

I was a contributor to this work and am recognized as an author on the related publication. The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity.

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.

What do researchers, publishers, librarians, and data repository managers understand about the role of metadata in their work? Metadata is descriptive information about research resources themselves, and it provides important insights for discovering new knowledge, organizing resources, and understanding who the experts are in any field. In this comprehensive study, these constituents responded to a survey to reveal their awareness, knowledge and use of metadata. The results were analyzed and published in the peer reviewed academic journal, Quantitative Science Studies by MIT Press.