Audio of the conference below. Transcripts of the audio available upon request.

Welcome:

Dialogue One:

Dialogue Two:

Welcome Day 2:

Dialogue Three:

Dialogue Four:

Breakout Groups Intro:

Breakout Groups, Report Back, Discussion, Closing:

Co-Sponsored by the National Science Foundation, the NHGRI program of the NIH, the UC North Bioethics Collaboratory, and the UCSC Genomics Institute

The Just Data? event will be held in the Alumni Room located at the University of California, Santa Cruz

 


Day 1: May 18, 2016

Part I: Big, Open Data: Why Not? Why care? What is the Problem Space?


2:00PM

Welcome

David Haussler (Director, Genomics Institute, UCSC)

Jenny Reardon (Director, Science and Justice Research Center, UCSC)


2:15-3:45 PM

Dialogue 1: What are Data and are they changing in an Era Of Big Data and Precision Medicine?

Michael Troncoso (Managing Counsel, Health Law & Medical Center Services, University of California, Office of General Counsel)

Janet Shim (Associate Professor, Social and Behavioral Sciences, UCSF)

Hannah Landecker (Director, Institute for Society and Genetics, UCLA)

Lawrence Kushi (Director of Scientific Policy at the Kaiser Permanente Northern California Division of Research)

Dialogue Moderator: Nick Anderson (UC Davis, Director of Informatics Research) Jenny Reardon (Director, Science and Justice Research Center, UCSC)


4-5:30 PM

Dialogue 2: What’s happening to health and healthcare in an age of big data?

John Mattison (Chief Medical Information Officer, Kaiser Permanente, SCAL)

Laura Mamo (Professor of Health Education and Associate Director, Health Equity Institute, San Francisco State University)

Kurt Snipes (Chief of Cancer Surveillance & Research Branch)

Gail Jarvik (Head of Division of Medical Genetics and Professor of Genome Sciences, University of Washington)

Garen Corbett (Director, California Health Benefits Review Program, University of    California Office of the President)

Dialogue Moderator: Malia Fullerton (Associate Professor of Bioethics and Humanities, University of Washington)


Day 2: May 19, 2016


8:45-9 Welcome Back and Plan for the Day

9-10:30 AM

Dialogue 3: What is happening to the governance of biodata in an age of open data?

Robert Cook-Deegan (Research Professor Sanford School of Public Policy, Duke University)

Nanibaa’ A. Garrison (Assistant Professor in the Division of Bioethics, Treuman Katz  Center for Pediatric Bioethics, Seattle Children’s)

Vivette García Deister (Associate Professor, Departamento de Biología Evolutiva, Facultad de Ciencias, Universidad Nacional Autónoma de MéxicoUNAM)

Emily E. Vasquez (Graduate Student, Columbia University, Department of Sociomedical Sciences and Universidad Nacional Autónoma de MéxicoUNAM)

Mildred Cho (Professor of Pediatrics, Associate Director, Center of Biomedical Ethics at Stanford University School of Medicine)

Dialogue Moderator: Barbara Koenig, (Director of Center for Transdisciplinary Ethical, Legal and Social Implications (ELSI) Research in Translational Genomics, UCSF)


10:45-12:15 PM

Dialogue 4: Precision Medicine: Interrogating the Promise

Atul Butte (Director, California Initiative to Advance Precision Medicine, UCSF)

Peter Yu (Immediate-Past President of the American Society of Clinical Oncology (ASCO), Director of Cancer Research, Palo Alto Medical Foundation)

Ida Sim (Professor, UCSF School of Medicine, Co-Director Biomedical Informatics at UCSF’s Clinical and Translational Sciences Institute)

David Haussler (Director, Genomics Institute, UCSC)

Dialogue Moderator: Julie Harris-Wai, (Associate Director of Center for Transdisciplinary Ethical, Legal and Social Implications (ELSI) Research inTranslational Genomics, UCSF)


12:30-1:30 Lunch in the Sentinel and Alumni Room


Part 2: Creating the Science and Justice Agenda in an Age of Open Data and Precision Medicine


How do we create “good science” (Thompson 2013) in the context of the Precision Medicine Initiative? What do we need to understand and what should we do if we want knowledge, better care and just, equitable words to be guiding goals of open, big data approaches to health?

Discussant: Charis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies; Director Chau Hoi Shuen Program in Gender & Science, UC Berkeley)

1:30-3:15 PM Breakout Groups

Breakout Group Leaders:

Kate Weatherford Darling (PhD Candidate, Sociology, UCSF)

Ugo Edu (Health Equity Institute, San Francisco State University)

Martha Kenney (Assistant Professor, Women and Gender Studies, San Francisco State University)

Jacob Metcalf (Researcher, Data & Society Research Institute)

Sonia Rab Alam (PhD Candidate, Sociology, UCSF)

3:15-3:30 PM 15 min break

3:30-4 PM Breakout group Report backs

4-4:30 PM General Discussion and Creation of Agenda

4:30-5:00 PM Next Steps and Closing Remarks

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