Transcript of "UCSF Informatics Day 2014 - Wylie Burke, "Bioethical Issues in Genomics and Electronic Health Records""
Bioethical Issues in Genomics
and Electronic Health Records
Wylie Burke MD PhD
Department of Bioethics and Humanities
University of Washington
2013-14 Presidential Chair
University of California San Francisco
The challenge…ethically and
“…big data becomes transformative when
disparate datasets can be linked at the
individual person level… [BUT]
big biomedical data are scattered
across institutions and intentionally
isolated to protect patient privacy.”
Weber et al JAMA 2014
Blurring the line between clinical
care and research
Clinical information research
Transparency /choices for opting out
Justification for using health information
Adequacy of confidentiality protection
Research information clinical care
UCSF CT2G Working Group on Clinical-Research Interface
Whom do you trust to do what?
Who would you trust to handle your
Take care of your child?
Use your personal health information?
Kohn M. Trust Oxforf Univ Press
Public campaigns against research use
of newborn screening samples
“Information commons” policy questions
How much choice can and should patients have?
Can health data be uploaded without consent?
Who decides about data access? On what basis?
Identification of use and mis-use:
What kinds of audit trails are in place? Can mis-
use be identified, with appropriate consequences?
What information is owed to people whose data
Daniel Dohan PhD
Elizabeth Boyd PhD
Barbara Koenig PhD
Jen Hult, MPH
Sarah Dry, MD
Arleen Brown MD
What do Californians want from UC for
Deliberative Community Engagement
Two events held, each with 27 random selected
deliberants, 4 days face-to-face, in LA (June 2013)
& SF (September 2013)
Education: Briefing book, website, expert talks
Deliberation: Facilitated small/large group
discussions, develop recommendations
Recommendations: Endorse agreements,
identify disagreements, present results to other
Areas of strong agreement
Meaningful involvement of community in
Public education and communication
Monitoring and consequences for mis-use
Clear consent forms, using simple
Areas of persistent disagreement
How community should be represented
Whether leftover samples can be used
Scope of data-sharing
Methods development for
Meaningful ways to engage public
Innovative stewardship models
Mechanisms for accountability
A particular slide catching your eye?
Clipping is a handy way to collect important slides you want to go back to later.