Genetic Privacy and Database Re-identification Risks
Genetic databases usually contain data from individuals that links their genome (DNA sequence) to traits or “phenotypes” associated with health, disease, drug response and other health conditions. These databases are critical for advancing medical research, but pose a potential problem because they can be combined with other databases to re-identify the research participants. When this happens, participants can lose faith in the system and put the entire medical research enterprise in jeopardy. In this talk, I will discuss the challenges in genetic database re-identification, the issue of honest and realistic informed consent about database security, and the challenges to society in balancing database security and the need for biomedical discovery.
Russ Biagio Altman is a professor of bioengineering, genetics, medicine, and biomedical data science (and of computer science, by courtesy) and past chairman of the Bioengineering Department at Stanford University. His primary research interests are in the application of computing and informatics technologies to problems relevant to medicine. He is particularly interested in methods for understanding drug action at molecular, cellular, organism and population levels. His lab studies how human genetic variation impacts drug response (e.g., http://www.pharmgkb.org/). Other work focuses on the analysis of biological molecules to understand the actions, interactions and adverse events of drugs (e.g., http://feature.stanford.edu/). He helps lead an FDA-supported Center of Excellence in Regulatory Science & Innovation. Dr. Altman holds an AB from Harvard College, and an MD from Stanford Medical School, and a PhD in Medical Information Sciences from Stanford. He received the U.S. Presidential Early Career Award for Scientists and Engineers and a National Science Foundation CAREER Award. He is a fellow of the American College of Physicians (ACP), the American College of Medical Informatics (ACMI), the American Institute of Medical and Biological Engineering (AIMBE), and the American Association for the Advancement of Science (AAAS). He is a member of the National Academy of Medicine (formerly the Institute of Medicine, IOM). He is a past-president, founding board member, and a fellow of the International Society for Computational Biology (ISCB), and a past-president of the American Society for Clinical Pharmacology & Therapeutics (ASCPT). He has chaired the Science Board advising the FDA commissioner, currently serves on the NIH Director’s Advisory Committee, and is cochair of the IOM Drug Forum. He is an organizer of the annual Pacific Symposium on Biocomputing, and a founder of Personalis, Inc. Dr. Altman is board certified in Internal Medicine and in Clinical Informatics. He received the Stanford Medical School graduate teaching award in 2000 and mentorship award in 2014.