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November 1-2, 2018 Meeting

Agenda (PDF - 195 KB)

Meeting Minutes (PDF - 308 KB)

Webcast: (Pending)

  • November 1, 2018
  • November 2, 2018

Transcript:

Presentations

Thursday, November 1, 2018

Opening Remarks and Committee Correspondence – Day 1 (PDF - 159 KB)
Joseph Bocchini, MD
Committee Chair

Condition Nomination for Cerebrotendinous Xanthomatosis (CTX) (PDF - 77 KB)
Scott Shone, PhD
Committee Member

Baby’s First Test (PDF - 1.5 MB)
Natasha Bonhomme
Chief Strategy Officer, Genetic Alliance

Panel: Education Activities in Newborn Screening 
Beth Tarini, MD, MS, FAAP (PDF - 1.7 MB)
Committee Member
Chair, Education and Training Workgroup

Jackie Seisman, MPH (PDF - 1.3 MB)
Assistant Director of Maternal & Child Health, Genetic Alliance

Debra Freedenberg, MD, PhD (PDF - 969 KB)
Medical Director, Newborn Screening and Genetics, Texas Dept of State Health Services

Susan Berry, MD (PDF - 1.7 MB)
Committee Member

Kimberly Noble Piper, RN (PDF - 979 KB)
Executive Officer, Center for Congenital and Inherited, Iowa Dept of Public Health

Friday, November 2, 2018

Opening Remarks and Committee Correspondence - Day 2 (PDF - 33 KB)
Joseph Bocchini, MD
Committee Chair

Panel: Genomic Sequencing in Newborn Screening: Ethical, Legal, and Social Implications 

Cynthia Powell, MD (PDF - 1.6 MB)
Committee Member

Josephine Johnston, MS (PDF - 1.2 MB)
Director of Research
The Hastings Center

John Lantos, MD (PDF - 547 KB)
Director of Pediatric Bioethics and Professor of Pediatrics
University of Missouri-Kansas City, School of Medicine

Barbara Koenig, PhD
Professor of Medical Anthropology & Bioethics and Director of Bioethics
University of California at San Francisco

Ethical, Legal, Social & Policy Considerations for Newborn Screening Pilot Studies (PDF - 556 KB)
Jeffrey Brosco, MD, PhD
Committee Member

Education and Training Workgroup Update (PDF - 223 KB)
Beth Tarini, MD
Committee Member
Chair, Education and Training Workgroup

Follow-Up and Treatment Workgroup Update (PDF - 407 KB)
Jeffrey P. Brosco, MD, PhD
Committee Member
Chair, Follow-up and Treatment Workgroup

Laboratory Standards and Procedures Workgroup Update (PDF - 28 KB)
Kelli Kelm, PhD
Ex-Officio Committee Member - Food and Drug Administration
Chair, Laboratory Standards and Procedures Workgroup

Ad-Hoc Workgroup – Interpreting NBS results (PDF - 80 KB)
Mei Baker, MD
Committee Member

Date Last Reviewed:  May 2019