From "Informed" to "Engaged" Consent: Risks and Obligations in Consent for Participation in a Health Data Repository

Elizabeth Bromley¹, Alexandra Mendoza-Graf¹, Sandra Berry¹+2

• ¹Elizabeth Bromley, M.D., Ph.D., is Associate Professor in Residence in the Departments of Psychiatry and Anthropology at the University of California, Los Angeles. Alexandra Mendoza-Graf, M.A., is an Assistant Policy Researcher at RAND and Doctoral Fellow at the Pardee RAND Graduate School in Los Angeles, CA. Her research focuses on the social determinants of health. Sandra Berry, M.A., is a senior behavioral scientist at RAND Corporation and senior director of RAND's Survey Research Group. Camille Nebeker, Ph.D., is Director of the Research Center for Optimal Digital Ethics (ReCODE.health) at UC San Diego. Her faculty appointment is with the Division of Behavioral Medicine in the Department of Family Medicine and Public Health at UC San Diego. Dmitry Khodyakov, Ph.D., is a Senior Behavioral/Social Scientist at the RAND Corporation. His research focuses on research ethics, partnered research, stakeholder engagement, and methods of expert elicitation.