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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 trans- lational 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 Welcome 9:00–9:10 A.M. Wylie burke, Roundtable Chair, and professor and Chair of the Department of bioethics and Humanities, Uniersity of Washington 

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 USING RESIDUAL NEWbORN SCREENING SAMpLES 9:10–10:20 A.M. CuRRENT STATuS REGARDING STORAGE OF NBS SAMPLES Current state practices and policies 9:10–9:30 A.M. Alissa Johnson, Johnson policy Consulting Rationale for storing newborn screening samples 9:30–9:50 A.M. Kenneth pass, Senior Research Scientist, New York State Department of Health Wadsworth Center Discussion 9:50–10:20 A.M. 10:20–10:30 A.M. BREAk 10:30 A.M.– RESEARCH OPPORTuNITIES ON 12:20 P.M. NBS SAMPLES Continuum from service to research 10:30–10:50 A.M. Anne Comeau, Deputy Director New England Newborn Screening program; Associate professor, Department of pediatrics, Uniersity of Massachusetts Medical School Opportunities for broader research 10:50–11:10 A.M. 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, Uniersity of Michigan Implications of dataset linkage 11:10–11:30 A.M. Michele Caggana, Deputy Director Diision 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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 AppENDIX A Discussion 11:30 A.M.– 12:20 P.M. 12:20–1:20 P.M. WORkING LuNCH 1:20–3:30 P.M. SuRMOuNTING CHALLENGES Importance of retaining the core mission of new- 1:20–1:40 P.M. born screening programs Alan Fleischman, Medical Director, March of Dimes Foundation Balancing issues from the patient/parent 1:40–2:00 P.M. perspective Sharon Terry, president and CEO, Genetic Alliance Informed consent and stewardship 2:00–2:20 P.M. Kelly Edwards, Associate professor Department of bioethics and Humanities, Uniersity of Washington School of Medicine Legal issues related to the usage of newborn 2:20–2:40 P.M. screening samples Ellen Wright Clayton, Rosalind E. Franklin professor of Genetics and Health policy; Director, Center for biomedical Ethics and Society, Vanderbilt Uniersity Discussion 2:40–3:30 P.M. 3:30–3:45 P.M. Break 3:45–4:45 P.M. WEIGHING THE VALuE Panel discussion examining the potential benefits 3:45–4:45 P.M. 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

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0 USING RESIDUAL NEWbORN SCREENING SAMpLES 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 Summary and wrap-up discussion 4:45–5:30 P.M. Wylie burke, Roundtable Chair and professor and Chair of the Department of bioethics and Humanities, Uniersity of Washington