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May 11-12, 2015 Meeting


Meeting Minutes (PDF - 544 KB)


Day 1

Impact of the Affordable Care Act's Coverage Mandate on State Newborn Screening Programs

Julia Costich, JD
University of Kentucky College of Public Health

Newborn Screening Saves Lives Reauthorization Act of 2014 - Informed Consent Amendment

Overview of Newborn Screening Laboratory
Processes and Quality Management
Scott Shone, PhD
New Jersey Newborn Screening Program
Amendment 12 of the NBS Saves Lives
Reauthorization Act of 2014: Landscape and Potential Implication
Michelle Huckaby Lewis, M.D., J.D.
Research Scholar
Berman Institute of Bioethics
Johns Hopkins University
Summary of the Secretary's Advisory Committee on Human Research Protections Meeting on the NBS Informed Consent Amendment
Jeff Botkin, MD
Committee Member ACHDNC
Committee Chair SACHRP
University of Utah
Texas Opt-In Methodology for Sample Storage and Research
Susan Tanksley, PhD
Texas Newborn Screening Laboratory
Michigan Opt-In Methodology for Sample Storage and Research
Carrie Langbo
Michigan Newborn Screening Program

Day 2

Long-Term Follow-Up in Newborn Screening: An Update on ACMG's Work on the NBSTRN and NCC
Amy Brower, PhD
Project Manager, NBSTRN/NCC
American College of Medical Genetics and Genomics
Update on ALD
Alex Kemper, MD, MPH, MS
Condition Review Workgroup
Duke Clinical Research Institute and
Department of Pediatrics
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Date Last Reviewed:  June 2017