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Newborn Screening

Research Ethics Consultation Service

Newborn Screening

2008 Policy Forum on Newborn Screening- May 5, 2008

This year’s policy forum, sponsored by the Center for Genomics and Society and the Carolina Center for Genome Sciences, celebrated the leadership of North Carolina nationally in the implementation of high quality newborn screening for its citizens. The purpose of this event was to establish a dialogue among scientific and clinical experts, bioethicists, activists, families, and policy makers. This forum helped to prepare legislators to anticipate the social and legal issues that are being raised by rapid changes in screening technology and emerging interests in identifying a broader range of genetic conditions.

Topics discussed included:

1. The Basics of Newborn Screening
How does it work? Who gets screened? What do we/can we screen for? How are families with affected newborns notified? What happens next for these families? What can be done for these conditions?

2. Cost/Benefit Analysis
How can we evaluate a newborn screening program on a cost/benefit basis? What are the costs? What are the benefits? Who benefits? What additional resources might be needed?

3. Policy
What are other states doing and how are their policies working? What issues can we anticipate now? For example, should newborn blood spots be stored and if so, for what purposes?

The Speakers

Cindy Powell, M.D., M.S. is an Associate Professor of Pediatrics and Genetics at the University of North Carolina at Chapel Hill and Chief of the Division of Genetics and Metabolism in the Department of Pediatrics at UNC School of Medicine. She is also the Medical Director of the Cytogenetics Laboratory at UNC Hospitals and Director of the Medical Genetics Residency Program. Her clinical and research activities include genetic causes of hearing loss, Native American myopathy, constitutional chromosome abnormalities and newborn screening for genetic disorders.

Dr. Powell gave an overview of newborn screening. Click here to view her presentation.

Leslie Wolf, Ph.D., is Director of the North Carolina State Laboratory of Public Health located in Raleigh, NC. The North Carolina State Laboratory of Public Health is part of the Epidemiology Section, Division of Public Health, Department of Health and Human Services. In addition to providing newborn screening for babies born in North Carolina, the State Laboratory of Public Health provides screening, diagnostic, reference and emergency response testing for both clinical and environmental samples.

Dr. Wolf spoke about the challenges of expanded newborn screening. Click here to view her presentation.

Aaron Goldenberg, M.A, M.P.H. is currently a Ph.D. candidate in the Department of Bioethics at Case Western Reserve University and a Research Associate in the Center for Genetics Research, Ethics and Law. His work focuses on the ethical and social issues surrounding advances in public health genomics, newborn screening, genetics and health disparities, and the intersection between bioethics and public health ethics. Aaron's dissertation focuses on the ethical issues surrounding the use of residual newborn screening bloodspots for research purposes.

Click here for a complete list of attendees.


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The Center for Genomics and Society is supported by the ELSI Research Program of the National Human Genome Research Institute of the National Institutes of Health, Grant Number P50HG004488.