On March 1, 2017. Public Responsibility in Medicine and Research (PRIM&R) hosted a workshop entitled, “Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop.” Researchers, institutional representatives, ethicists, policy makers and many others examined new scientific opportunities and important ethical challenges that arise from collecting, accessing, sharing and using individual’s data for research.
The workshop considered four complex ethical areas: 1) the value of research with shared dates; 2) individuals’ rights and expectations with regards to their data; 3) consent, authorization, and data stewardship; and 4) responsibility for the ethical oversight of research involving data access, use, and sharing.
In Panel II, “Conceptualizing an individual’s rights, interests, and expectations with regard to their health and other data,” Dr. Celia Fisher, Director of Fordham University’s Center for Ethics Education and HIV and Drug Abuse Prevention Research Ethics Training Institute, focused on concerns related to socially marginalized populations and group harms that emerge in the collection and use of large data sets. Dr. Fisher stressed the importance of “fostering public transparency and stakeholder participation in the risk-benefit analysis of how big data are used.”
To watch Dr. Fisher’s presentation, please click play on the embedded video below. For the entire workshop recording, please visit PRIM&R’s website here.
Dr. Fisher is the Mary Ward Doty University Chair in Ethics at Fordham University, a professor of Psychology and the director of Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute. In addition to chairing the 2002 revision of the American Psychological Association’s Ethics Code, Fisher’s Decoding the Ethics Code: A Practical Guide for Psychologists is now in its fourth edition from Sage Publications. Please visit her webpage for more information about her work, as well as the Fordham University Center for Ethics Education Research page.