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SACGHS Meetings |
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Thursday, February 4, 2010 - Genomic Data Sharing-Objectives, Mechanisms, and Policies
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Introduction
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Charmaine Royal, Ph.D., SACGHS Member
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Review of Federal Activities Related to Genomic Data Sharing
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Laura Lyman Rodriguez, Ph.D., Acting Director, Office of Policy, Communications, and Education, National Human Genome Research Institute, NIH
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Slides
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Committee Discussion
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Future Directions in Health Information Technology
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Joyce Mitchell, Ph.D., Professor and Chair, Department of Biomedical Informatics, University of Utah School of Medicine
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Slides
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Committee Discussion
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Genomic Data Sharing Models
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Health Care Systems Mode
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Catherine Schaefer, Ph.D., Executive Director, Research Program, Kaiser Permanente
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Slides
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Academic Model
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Daniel Masys, M.D., Professor and Chair, Biomedical Informatics, Vanderbilt University
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Slides
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Government Model
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Laura Lyman Rodriguez, Ph.D., Acting Director, Office of Policy, Communications, and Education, National Human Genome Research Institute, NIH
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Commercial Model
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Mark Hoffman, Ph.D., Director, Translational Medicine, Cerner Corporation
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Slides
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Consumer-Controlled Model
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Robert H. Shelton, M.B.A., Co-Founder, Chairman, Chief Executive Officer, Private Access, Inc.
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Slides
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Committee Discussion and Next Steps
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Summation of Session
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Dr. Royal
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Transcript
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Friday, October 9, 2009 - Genomic Data Sharing Priorities
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Discussion of Proposed Steps for the SACGHS Priority Topic on Ethical Implications of Genomic Data Sharing
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Charmaine Royal, Ph.D., SACGHS Member
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Transcript
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Slides
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Thursday, March 12, 2009 - Session on Informed Consent, Privacy, and Discrimination Issues Related to Genomic Data Sharing
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Session Purpose and Overview
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Kevin FitzGerald, S.J., Ph.D., Ph.D., SACGHS Member
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Institute of Medicine Report: Beyond the HIPAA Privacy Rule
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Larry Gostin, J.D., Chair, IOM Committee on Health Research and the Privacy of Health Information
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Slides
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Informed Consent Issues of Concern to the Advisory Committee for Heritable Disorders Newborns and Children (ACHDNC)
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R. Rodney Howell, M.D., Chair, ACHDNC
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Slides
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Committee Discussion of Issues and Next Steps for Issues Related to Informed Consent on Genomic Data Sharing
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Transcript
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