Free the Data but Not the Human Subjects Identifiers

Abstract

Data ethics have shifted from the “free the data” movement in the 2010s to an era of regulatory considerations as technological advances in artificial intelligence, machine learning, and data mining in the 2020s to escalate awareness of the risk and dangers to individual privacy for the release of data with personally identifiable information and human subject identifiers. This commentary provides highlights of the concurrent U.S. and global regulatory groups considering immediate and needed regulatory changes to protect personally identifiable information and data with human subjects identifiers in this new decade. It remains essential in this time of momentous change for leadership of institutional review boards, human research protection programs, and other research ethics committees to remain attentive to these emergent policy events in the context of human subjects research as discussions continue into a new year for ongoing conversations around data privacy.

Keywords: Data Ethics, Data Deidentification, Human Subjects Data, Human Subjects Identifiers, Data Mining, Data Privacy