Practical Tips for Ethical Data Sharing

Abstract

This Tutorial provides practical dos and don’ts for sharing research data in ways that are effective, ethical, and compliant with the federal Common Rule. I first consider best practices for prospectively incorporating data-sharing plans into research, discussing what to say—and what not to say—in consent forms and institutional review board applications, tools for data de-identification and how to think about the risks of re-identification, and what to consider when selecting a data repository. Turning to data that have already been collected, I discuss the ethical and regulatory issues raised by sharing data when the consent form either was silent about data sharing or explicitly promised participants that the data would not be shared. Finally, I discuss ethical issues in sharing “public” data.