Principles and Guidelines for Sharing Biomedical Data for Secondary Use: The University of Chicago Perspective

TL;DR

This paper discusses principles, risks, and guidelines for sharing biomedical data at the University of Chicago, balancing research benefits with patient privacy protection.

Contribution

It provides a structured set of principles and guidelines specifically for biomedical data sharing at academic medical centers.

Findings

Established risk mitigation strategies for data sharing.

Outlined decision-making principles for data access.

Highlighted importance of balancing research and privacy.

Abstract

Academic medical centers are generating an increasing amount of biomedical data and there is an increasing demand for biomedical data for research purposes by research projects, research consortia, companies, and other third parties. At the same time, as the number of patients grows and the amount of data per patient grows, there is an increasing possibility that some information about some patients may become available if the data is shared with third parties and the third parties have a data breach or violate the terms of the data use agreement. Balancing the importance of research that may result in improved patient outcomes with the importance of protecting patient data is challenging. The article discusses the principles, considerations about risks and mitigating risks, and guidelines used at the University of Chicago used for making decisions about sharing biomedical data with third parties.