Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary (2010)
Chapter: Appendix A: Workshop Agenda
Appendix A
Workshop Agenda
Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: A Workshop
May 24, 2010
The Keck Center of the National Academies
500 Fifth Street, NW
Washington, DC 20001
MEETING OBJECTIVE
To examine and explore the access to, use of, and storage of dried blood spots that have been collected for newborn screening purposes through questions such as:
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What are the benefits of making these resources available for translational research?
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How do we protect the privacy and rights of individuals while allowing access to newborn screening samples?
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How can we make these samples available without compromising the main function of the newborn screening program?
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8:00–9:00 A.M. |
WORKING BREAKFAST |
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9:00 A.M. |
PUBLIC WORKSHOP BEGINS—KECK 100 |
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9:00–9:10 A.M. |
Welcome |
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Wylie Burke, Roundtable Chair, and Professor and Chair of the Department of Bioethics and Humanities, University of Washington |
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9:10–10:20 A.M. |
CURRENT STATUS REGARDING STORAGE OF NBS SAMPLES |
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9:10–9:30 A.M. |
Current state practices and policies |
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Alissa Johnson, Johnson Policy Consulting |
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9:30–9:50 A.M. |
Rationale for storing newborn screening samples |
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Kenneth Pass, Senior Research Scientist, New York State Department of Health Wadsworth Center |
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9:50–10:20 A.M. |
Discussion |
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10:20–10:30 A.M. |
BREAK |
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10:30 A.M.–12:20 P.M. |
RESEARCH OPPORTUNITIES ON NBS SAMPLES |
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10:30–10:50 A.M. |
Continuum from service to research |
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Anne Comeau, Deputy Director New England Newborn Screening Program; Associate Professor, Department of Pediatrics, University of Massachusetts Medical School |
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10:50–11:10 A.M. |
Opportunities for broader research |
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Sharon Kardia, Professor and Chair of Epidemiology; Director, Public Health Genetics Program; Director, Life Science and Society Program; Co-Director, Center for Genomics and Public Health School of Public Health, University of Michigan |
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11:10–11:30 A.M. |
Implications of dataset linkage |
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Michele Caggana, Deputy Director Division of Genetics; Chief, Laboratory of Human Genetics; Director, Newborn Screening Program; Head, Genetic Testing Section, New York State Department of Health Wadsworth Center |
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11:30 A.M.–12:20 P.M. |
Discussion |
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12:20–1:20 P.M. |
WORKING LUNCH |
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1:20–3:30 P.M. |
SURMOUNTING CHALLENGES |
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1:20–1:40 P.M. |
Importance of retaining the core mission of new born screening programs |
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Alan Fleischman, Medical Director, March of Dimes Foundation |
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1:40–2:00 P.M. |
Balancing issues from the patient/parent perspective |
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Sharon Terry, President and CEO, Genetic Alliance |
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2:00–2:20 P.M. |
Informed consent and stewardship |
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Kelly Edwards, Associate Professor Department of Bioethics and Humanities, University of Washington School of Medicine |
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2:20–2:40 P.M. |
Legal issues related to the usage of newborn screening samples |
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Ellen Wright Clayton, Rosalind E. Franklin Professor of Genetics and Health Policy; Director, Center for Biomedical Ethics and Society, Vanderbilt University |
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2:40–3:30 P.M. |
Discussion |
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3:30–3:45 P.M. |
Break |
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3:45–4:45 P.M. |
WEIGHING THE VALUE |
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3:45–4:45 P.M. |
Panel discussion examining the potential benefits that could be derived from the use of dried blood spots for translational research versus the issues that need to be overcome |
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Ann Waldo, Senior Counsel, Genetic Alliance |
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Michele Caggana, New York State Department of Health Wadsworth Center Alan Fleischman, Medical Director, March of Dimes Foundation |
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4:45–5:30 P.M. |
SUMMARY AND WRAP-UP DISCUSSION |
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4:45–5:30 P.M. |
Summary and wrap-up discussion |
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Wylie Burke, Roundtable Chair and Professor and Chair of the Department of Bioethics and Humanities, University of Washington |
