UCSF Informatics Day 2014 - Wylie Burke, "Bioethical Issues in Genomics and Electronic Health Records"
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This document discusses several bioethical issues related to genomics and electronic health records. It touches on the challenges of linking disparate health datasets while protecting patient privacy. It also examines the blurring lines between clinical care and research when using individuals' health information. Specifically, it raises questions around informed consent, transparency, justification for using data, and ensuring adequate confidentiality. The document also explores issues of trust in different contexts and public concerns about the use of newborn screening samples in research. Finally, it discusses developing policy around "information commons" and engaging stakeholders to help shape biorepository research standards.
![The challenge…ethically and
scientifically
“…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](https://image.slidesharecdn.com/burkeucsfinformaticsjune2014-140623150542-phpapp01/85/UCSF-Informatics-Day-2014-Wylie-Burke-Bioethical-Issues-in-Genomics-and-Electronic-Health-Records-2-320.jpg)
UCSF Informatics Day 2014 - Wylie Burke, "Bioethical Issues in Genomics and Electronic Health Records"
- 1. 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
- 2. The challenge…ethically and scientifically “…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
- 5. 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 Therapeutic misconception Premature translation Participant rights UCSF CT2G Working Group on Clinical-Research Interface (Koenig/Somkin)
- 6. Trust Context specific… Whom do you trust to do what? Who would you trust to handle your money? Take care of your child? Use your personal health information? Kohn M. Trust Oxforf Univ Press
- 7. Public campaigns against research use of newborn screening samples http://www.cchfreedom.org/issue.php/14#.U01sHtyuJTk
- 8. “Information commons” policy questions Consent How much choice can and should patients have? Can health data be uploaded without consent? Governance 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? Communication What information is owed to people whose data are included?
- 9. EngageUC: Engaging University of California Stakeholders for Biorepository Research Daniel Dohan PhD Elizabeth Boyd PhD Barbara Koenig PhD Jen Hult, MPH Sarah Dry, MD Arleen Brown MD
- 10. What do Californians want from UC for biorepository research? 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 stakeholders
- 11. Areas of strong agreement (partial list) Meaningful involvement of community in oversight Public education and communication Monitoring and consequences for mis-use Clear consent forms, using simple language
- 12. Areas of persistent disagreement (partial list) How community should be represented Whether leftover samples can be used without consent Scope of data-sharing
- 13. Methods development for ethical policy-making Meaningful ways to engage public discussion Innovative stewardship models Mechanisms for accountability