Date: December 6, 2017
Title: Biomedical Innovations for Public Good: Exploring Themes of Public Health, Public Trust, and Science Trustworthiness
Speaker: Cinnamon Bloss, Ph.D (University of California at San Diego)
Abstract: The successful application of scientific innovations to improve human health, in part, depends on the appropriate acceptance and use of such technologies by those they aim to help. This presentation will highlight empirical ethics studies designed to evaluate the impacts of advances in biomedical science and technology on individuals, public health, and society. Specific areas discussed will include genome sequencing, genome editing, and privacy. Findings across studies suggest similar challenges to the successful translation of advances in these areas. These challenges include the limits of the science itself and attempts at premature translation, the potential for creation or exacerbation of health disparities, and challenges related to building, maintaining - and deserving - public trust, which is foundational to any successful public health intervention.
Bio: Cinnamon Bloss, Ph.D. is Associate Professor in the Departments of Psychiatry and Family Medicine and Public Health, Division of Health Policy at the University of California, San Diego (UCSD). She is an adjunct Policy Analyst at the J. Craig Venter Institute and a California-licensed clinical psychologist. Dr. Bloss's career has been focused on transdisciplinary research. She has managed a number of multidisciplinary research teams in the context of large-scale projects in areas such as direct-to-consumer genomics, genome sequencing in diagnostic odyssey cases, privacy and big data, and genome editing for control of infectious disease. She is a founding faculty member of the UCSD School of Public Health, a member of the UCSD School of Medicine Dean’s “Think Tank” for 21st Century Medical Education, and she manages an active independent research laboratory that includes several postdoctoral fellows, graduate students, undergraduates, and research staff.
Date: November 15, 2017
Location: Parthenon Room, Suite 1475, 2525 West End Avenue
Title: Has All of Us Changed Our Approach to Communities?
Speaker: Paul Spicer, Ph.D (University of Oklahoma)
Abstract: Community engagement is often offered as a partial remedy to the problem of lower rates of participation in genomic research for some racial and ethnic populations. It is not clear, however, whether the tenets of community-based participatory research can be honored in this research context. This presentation will seek to stimulate a discussion of what community engagement can and should mean in the context of large-scale genomic science.
Bio: Paul Spicer is a Professor of Anthropology at the University of Oklahoma and a Director of the Center for Applied Social Research. Dr. Spicer's research has included the anthropologies of health and human development; medical, psychological, and education anthropology; as well as alcoholism, obesity, and genetics. He received his Ph.D from the University of Minnesota in 1995.
Date: April 10, 2017
Location: Light Hall, Room 202
Title: Security in Personal Genomics: Lest We Forget
Speaker: Gene Tsudik, Ph.D (University of California at Irvine)
Abstract: Genomic privacy has attracted much attention from the research community, mainly since its risks are unique and breaches can lead to terrifying leakage of most personal and sensitive information. The much less explored topic of genomic security needs to mitigate threats of the digitized genome being altered by its owner or an outside party, which can have dire consequences, especially, in medical or legal settings. At the same time, many anticipated genomic applications (with varying degrees of trust) require only small amounts of genomic data. Supporting such applications requires a careful balance between security and privacy. Furthermore, genome’s size raises performance concerns.
We argue that genomic security must be taken seriously and explored as a research topic in its own right. To this end, we discuss the problem space, identify the stakeholders, discuss assumptions about them, and outline several simple approaches based on common cryptographic techniques, including signature variants and authenticated data structures. We also present some extensions and identify opportunities for future research. The main goal of this paper is to highlight the importance of genomic security as a research topic in its own right.
Bio: Gene Tsudik is a Chancellor's Professor of Computer Science at the University of California, Irvine (UCI). He obtained his PhD in Computer Science from USC in 1991. Before coming to UCI in 2000, he was at IBM Zurich Research Laboratory (1991-1996) and USC/ISI (1996-2000). Over the years, his research interests included numerous topics in security, privacy and applied cryptography. Gene Tsudik is a Fulbright Scholar, a Fulbright Specialist, a fellow of ACM, IEEE and AAAS, as well as a member of Academia European. From 2009 to 2015 he was the Editor-in-Chief of ACM Transactions on Information and Systems Security (TISSEC).
Date: March 3, 2017
Location: 2525 West End Avenue, 6th Floor Board Room
Title: When is Enough, Enough? Quantifying Anonymization of Clinical Reports in the Clinical Trials Transparency Space
Speakers: Martin Scaiano, Ph.D (Privacy Analytics, Inc.), Hazel Nicholls (Privacy Analytics, Inc.)
Abstract: How do we protect patient privacy while enabling research, advancements, and transparency in medical science? How can we quantify and justify de-identification of textual documents and establish a defensible level of anonymization? In this seminar, we introduce an information theory-based approach, which is effective on sparse and heterogeneous data such as is found in clinical reports associated with clinical trials. We will describe how we process clinical reports, measure and mitigate the risk of re-identification on these reports.
Bios: Martin Scaiano is a Senior Manager of Data Analytics at Privacy Analytics Inc, where he specializes in natural language processing and developing algorithms for measuring the risk of re-identification. Dr. Scaiano combines his research experience with over ten years of experience in software development, contributing to 5 patents. He received a doctorate in computer science from the University of Ottawa.
Hazel Nicholls leads the Clinical Trials Transparency team at Privacy Analytics Inc. She works on the design and implementation of data anonymization solutions, methodology, governance consulting, and training. She holds a bachelor's of mathematics from Carleton University and a bachelor's of education from the University of Ottawa.
Date: February 23, 2017
Location: Light Hall, Room 214
Title: What Happens to the Genome in Big Genomics Data?
Speaker: Emanuel Didier, Ph.D (French National Center for Scientific Research - CNRS)
Abstract: “Personalized medicine” has many meanings, often conflicting. In this talk, I will focus on the Undiagnosed Disease Network, an NIH-funded, very large genomics project, on which I am doing a multi- sited ethnography. In this seminar, I analyze how and what data they produce, and how the way they use it redefines personalized medicine.
Bio: Emmanuel Didier is a founding member and permanent researcher at Epidopo, a joint research unit funded by the French CNRS and UCLA and located in the latter. A sociologist, he specializes in the study of statistics as a tool of government. His
first book bore on the relationship between the invention of random sampling in the US and the political innovations of the New Deal such as State interventionism and State planning. His second book written with Isabelle Bruno is entitled Benchmarking. They studied the latest transformations of management by numbers in the French public administration, especially the police, hospital and education. His third book, entitled “Statactivisme”, is an edited volume, dedicated to gather and analyze ways in which, since the 1970s, ordinary people resist or pervert quantitative management tools, or use statistics to enhance their power against institutions.
He is now working on a project on big data in the domain of health and especially in genomics. After the Human Genome Project, he argues that genomics is now experiencing a deep transformation initiated by the availability of some huge storage and calculation facilities. His goal is to understand how this new kind of quantification will, at the same time, change the policies governing healthcare, alter the way individuals conceive themselves as subjected to disease, and redefine the way diagnoses are established.