Navigating ethical quandaries with the privacy dilemma of biomedical datasets

Gamze Görsoy, Megan Doerr, John Wilbanks, Jennifer K. Wagner, Haixu Tang, Steven E. Brenner

Research output: Contribution to journalConference articlepeer-review


With decreasing cost of biomedical technologies, the scale of the genetic and healthcare data have exponentially increased and become available to wider audiences. Hence, privacy of patients and study participants has garnered the attention of researchers and regulators alike. Availability of genetic and health care information for uses not anticipated at the time of collection 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 explore the issues surrounding data use to advance human health from a privacy perspective. Broadly this field can be considered in two encompassing areas: (1) Ethics and regulation of privacy: The ethical and regulatory 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: 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.

Original languageEnglish (US)
Pages (from-to)736-738
Number of pages3
JournalPacific Symposium on Biocomputing
Issue number2020
StatePublished - 2020
Event25th Pacific Symposium on Biocomputing, PSB 2020 - Big Island, United States
Duration: Jan 3 2020Jan 7 2020

All Science Journal Classification (ASJC) codes

  • Biomedical Engineering
  • Computational Theory and Mathematics


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