Genetic Testing and Alzheimer Disease
Draft Executive Summary:
Report of the Working Group on Genetic Testing and Alzheimer Disease
What's Next?
- Click
here for the Draft Executive Summary and
Recommendations of the Alzheimer Working Group of the Stanford Program
in Genomics, Ethics & Society.
- The
Alzheimer Research Forum plans to post an audio recording
of the conference on its Web site and set up an on-line discussion
group.
- The Stanford
Cable Channel (Channel 51) videotaped the conference and
plans to air it as a series of programs in January 1998.
- If you would like to purchase a set of audiotapes, please send a check for $25 to the address above, made payable to the Stanford Center for Biomedical Ethics (include your name, mailing address and telephone number), or call Heather Silverberg at (650) 498-7869.
Conference Program
8:00 - 8:30 a.m.
Registration
8:30 - 8:45
Welcome
Thomas A. Raffin, M.D. , Professor and Chief, Division of Pulmonary and Critical Care Medicine, Stanford Health Services; Co-Director, Stanford Center for Biomedical Ethics; Co-Director, Stanford Program in Genomics, Ethics, and Society
Edward Holmes, M.D. , Special Counsel on Biomedical Research to the President of Stanford University; Senior Associate Dean for Research, and Director of Clinical Molecular Medicine, Stanford University School of Medicine; Vice President for Translational Medicine and Clinical Research, Stanford Health Services
Tadataka Yamada, M.D. , President, SmithKline Beecham Healthcare Services
8:45 - 9:00
Introductory Remarks
The Honorable Senator Patrick Johnston , 5th District, California Legislature; Chair, Select Committee on Genetics and Public Policy
9:00 - 9:30
Recommendations of the Working Group of the Stanford Program
in Genomics, Ethics, and Society *
Henry T. Greely, J.D. , Professor of Law, Stanford University; Co-Director, Stanford Program in Genomics, Ethics, and Society
* This program is provided in accordance with the standards of the ACCME. PGES is supported in part by funding from SmithKline Beecham Corp. Recommendations are those of the Working Group, and do not necessarily represent the views of SmithKline Beecham Corp., nor have they been reviewed or approved by SmithKline Beecham Corp.
9:30 - 10:45
Panel: The Genetics of Alzheimer Disease
Moderator:
Paul
Berg, Ph.D. , Robert W. and Vivian K. Cahill Professor in Cancer
Research and Biochemistry; Director, Beckman Center for Molecular and
Genetic Medicine, Stanford University
Panelists:
Kenneth
S. Kosik, M.D. , Professor of Neurology (Neuroscience), Harvard
Medical School and Brigham and Women's Hospital ; Co-Author, When
Someone You Love Has Alzheimer's: The Caregiver's Journey
Neil Risch,
Ph.D. , Professor of Genetics, Stanford University School of Medicine
Dale B. Schenk, Ph.D. , Director
of Neurobiology, Athena Neurosciences, Inc.
Peter
St. George-Hyslop, M.D. , Professor of Medicine in the Division of Neurology,
and Director of the Centre for Research in Neurodegenerative Diseases, University
Toronto; Director, Alzheimer Clinic, Toronto Hospital
10:45 - 11:00
Break
11:00 - 11:30
The Social and Ethical Context of Genetic Testing
Michael M. Burgess, Ph.D. , Chair in Biomedical Ethics, Centre for Applied Ethics, University of British Columbia
11:30 - 12:00
The Role of Genetics in Alzheimer Disease: Clinical Implications
Lissy Jarvik, M.D., Ph.D., Distinguished Physician (Emer.), West Los Angeles Veterans Affairs Medical Center; Professor (Emer.), Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles
12:00 noon
Lunch
1:15-2:15 p.m.
Panel: Family / Caregiver Perspectives
Moderator:
Thomas A. Raffin, M.D.
Panelists:
Michael
Gilfix, J.D. , Gilfix Associates; Co-Founder and Fellow, National
Academy of Elder Law Attorneys
Beth Logan, M.S.W. , Manager of Education,
Family Caregiver Alliance
Jane Neilson, family mem ber
Kimberly
A. Quaid, Ph.D. , Clinical Associate Professor of Medical & Molecular
Genetics and Psychiatry, Department of Medical and Molecular Genetics, Indiana
University School of Medicine
2:15-3:00
Case Studies: Special Issues -- APOE Testing of Children
in Contact Sports; Using Genetic Tests to Diagnose Alzheimer Disease
Moderator:
Sara L. Tobin, Ph.D., M.S.W., Senior Research Fellow, Stanford Program in Genomics,
Ethics, and Society
Commentators:
Timothy A. Caulfield,
LL.M. , Research Director, Health Law Institute, University of
Alberta; Visiting Fellow, Stanford Program in Genomics, Ethics, and
Society
Stephen G.
Post, Ph.D. , Associate Professor and Associate Director for Educational
Programs, Center for Biomedical Ethics, Case Western Reserve University;
National Ethics Advisory Board, Alzheimer's Disease and Related Disorder
Association; Author, The Moral Challenge of Alzheimer Disease
3:00-3:15
Break
3:15-3:45
Medical Decision Analysis and Genetic Testing
Samuel Holtzman, Ph.D. , Consulting Associate Professor, Department of Engineering-Economic Systems & Operations Research, Stanford University
3:45-4:15
Predicting Alzheimer Disease: Implications for Financing
and Providing Long-Term Care
Linda S. Goodwin, M.D., formerly Vice President and Senior Medical Director of Underwriting, Mutual of Omaha Insurance Company; American Council of Life Insurance Medical Section, Genetic Testing Issues Committee
4:15-5:30
Panel: The Future of Genetic Testing and Alzheimer Disease
Moderator:
Barbara
A. Koenig, Ph.D. , Executive Director and Senior Research Scholar,
Stanford Center for Biomedical Ethics; Co-Director, Stanford Program
in Genomics, Ethics, and Society
Panelists:
Robert
Cook-Deegan, M.D. , Director, National Cancer Policy Board, Institute
of Medicine & Commission on Life Sciences, National Academy of
Sciences; Chair, Royalty Fund Advisory Committee, Alzheimer Association;
Author, The Gene Wars: Science, Politics and the Human Genome
George Cunningham, M.D, M.P.H. ,
Chief, Genetic Disease Branch, California Department of Health Services;
Principal Investigator, Pacific Southwest Regional Genetics Network
Linda S. Goodwin, M.D.
Stephen McConnell, Ph.D. ,
Senior Vice President for Public Policy, Alzheimer's Association; Lead Staff,
Alzheimer's Association National Ethics Advisory Panel
Dale Schenk, Ph.D.
Additional Information
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The Stanford University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to sponsor continuing medical education for physicians. The Stanford University School of Medicine designated this CONTINUING MEDICAL EDUCATION activity (Course #67600) for up to 7 credit hours in Category 1 of the Physician's Recognition Award of the American Medical Association. CME Category 1 credit is transferable as CEU's for nurses in the State of California.
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This conference was approved as a ONE CREDIT, SATISFACTORY / NO CREDIT COURSE (Med #253) for all Stanford students (undergraduate, graduate, medical).
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The Stanford Program in Genomics, Ethics, and Society (PGES) gratefully acknowledges funding for this conference by the SmithKline Beecham Corporation.
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