Why We Do What We Do: Data Reuse, Open Access and Privacy in Data Management at the Life Sciences Data Archive

As custodians of the unique and irreplaceable collections of human subject research data generated by the Human Research Program and its predecessors throughout the agency’s history, the Life Sciences Data Archive (LSDA) is charged with protecting participants’ privacy and implementing their consent decisions as it provides retrospective data for use in new studies. This active, stewardship-focused approach to data management and preservation shapes the products that LSDA provides to researchers and the responsibilities of researchers in using the data and publishing their results.

This presentation reviews how federal and agency mandates shape LSDA’s data management procedures and expectations for researchers. Topics covered will include LSDA’s movement towards implementation of the FAIR (Findable, Accessible, Interoperable, Reusable) principles and the archive’s evolving data management practices; collaboration between LSDA and the Lifetime Surveillance of Astronaut Health (LSAH) project (the repository of astronaut medical data); LSDA’s response to the challenges of performing its stewardship role and maintaining trust given the public profiles of the subjects whose data it preserves; and the ever-increasing challenges to expectations of subject privacy stemming from the growing power and ubiquity of data analysis and aggregation tools.