January 3-7, 2020
With decreasing cost of biomedical technologies, the amount and the size of the available genetic and healthcare data have exponentially increased and become available to wider audiences. Hence, privacy of patients and study participants has recently emerged as one of the major foci of studies. Availability of genetic and health care information gives rise to privacy concerns such that people suffer dignitary harm when their data is used in ways they did not desire or intend, even if no concrete economic damage results. In this workshop, we propose a practical and interactive exploration of the regulatory and ethical frames that govern data use to advance human health from a privacy perspective. We will have two sections: (1) Ethics of privacy, which we will discuss the ethical and moral frames through which we can consider privacy, the existing regulations regarding privacy and what is on the horizon, and implementation of such ethical considerations for data with the new Common Rule. (2) Approaches to ensuring privacy using technology, in which we will discuss the technologies that allow responsible use and sharing of data such as encryption and the quantification of privacy leakages in publicly available data through privacy attacks for better risk-assessment tools. We will end the workshop with a panel discussion. The mission is to bring together computational biologists, experimental biologists, computer scientists, ethicists, and policy and lawmakers to share ideas, discuss the challenges related to biological data and privacy and hopefully create collaborations.
Contact: Gamze Gursoy, Yale University; gamze.gursoy@yale.edu and Megan Doerr, Sage Bionetworks; megan.doerr@sagebionetworks.org
Steven E. Brenner, University of California, Berkeley; brenner@compbio.berkeley.edu
Haixu Tang, Indiana University, Bloomington; hatang@indiana.edu
John Wilbanks, Chief Commons Officer at Sage Bionetworks
Jennifer Wagner, Associate Director of Bioethics Research and Assistant Professor in the Center for Translational Bioethics and Health Care Policy at Geisinger