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Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×

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:

  • What are the benefits of making these resources available for translational research?

  • How do we protect the privacy and rights of individuals while allowing access to newborn screening samples?

  • How can we make these samples available without compromising the main function of the newborn screening program?

8:00–9:00 A.M.

WORKING BREAKFAST

9:00 A.M.

PUBLIC WORKSHOP BEGINS—KECK 100

9:00–9:10 A.M.

Welcome

 

Wylie Burke, Roundtable Chair, and Professor and Chair of the Department of Bioethics and Humanities, University of Washington

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×

9:10–10:20 A.M.

CURRENT STATUS REGARDING STORAGE OF NBS SAMPLES

9:10–9:30 A.M.

Current state practices and policies

 

Alissa Johnson, Johnson Policy Consulting

9:30–9:50 A.M.

Rationale for storing newborn screening samples

 

Kenneth Pass, Senior Research Scientist, New York State Department of Health Wadsworth Center

9:50–10:20 A.M.

Discussion

10:20–10:30 A.M.

BREAK

10:30 A.M.–12:20 P.M.

RESEARCH OPPORTUNITIES ON NBS SAMPLES

10:30–10:50 A.M.

Continuum from service to research

 

Anne Comeau, Deputy Director New England Newborn Screening Program; Associate Professor, Department of Pediatrics, University of Massachusetts Medical School

10:50–11:10 A.M.

Opportunities for broader research

 

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

11:10–11:30 A.M.

Implications of dataset linkage

 

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

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×

11:30 A.M.–12:20 P.M.

Discussion

12:20–1:20 P.M.

WORKING LUNCH

1:20–3:30 P.M.

SURMOUNTING CHALLENGES

1:20–1:40 P.M.

Importance of retaining the core mission of new born screening programs

 

Alan Fleischman, Medical Director, March of Dimes Foundation

1:40–2:00 P.M.

Balancing issues from the patient/parent perspective

 

Sharon Terry, President and CEO, Genetic Alliance

2:00–2:20 P.M.

Informed consent and stewardship

 

Kelly Edwards, Associate Professor Department of Bioethics and Humanities, University of Washington School of Medicine

2:20–2:40 P.M.

Legal issues related to the usage of newborn screening samples

 

Ellen Wright Clayton, Rosalind E. Franklin Professor of Genetics and Health Policy; Director, Center for Biomedical Ethics and Society, Vanderbilt University

2:40–3:30 P.M.

Discussion

3:30–3:45 P.M.

Break

3:45–4:45 P.M.

WEIGHING THE VALUE

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

 

Ann Waldo, Senior Counsel, Genetic Alliance

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×

 

Michele Caggana, New York State Department of Health Wadsworth Center

Alan Fleischman, Medical Director, March of Dimes Foundation

4:45–5:30 P.M.

SUMMARY AND WRAP-UP DISCUSSION

4:45–5:30 P.M.

Summary and wrap-up discussion

 

Wylie Burke, Roundtable Chair and Professor and Chair of the Department of Bioethics and Humanities, University of Washington

Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×
Page 57
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×
Page 58
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×
Page 59
Suggested Citation:"Appendix A: Workshop Agenda." Institute of Medicine. 2010. Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12981.
×
Page 60
Next: Appendix B: Speaker Biographical Sketches »
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Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues surrounding the use of residual specimens for translational research.

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