Repositories for sharing human data in stem cell research

Abstract

High-throughput biology is data intensive, and stem cell research is no exception to this trend. Funders often require scientists to share the data generated by high-throughput methods, because sharing speeds scientific discovery and increases the benefit of public investments in science. When human data are involved, the benefits of sharing must be balanced against the risks of inappropriately disclosing sensitive, personal information. Historically, scientists anonymized data to protect the interests of people whose data were shared. However, recent development of computational methods for re-identifying people from anonymous data and empirical demonstrations of re-identification have led many commentators to question whether anonymization still provides adequate protection for people whose data are included in shared databases. Because of disclosure concerns, data sharing repositories control who can access sensitive human data and what the approved users can do with those data. Stem cell researchers who create such repositories must develop governance mechanisms that prevent harm to individuals whose data they share.