CGS LOGO

The CGS is housed within the:

ccgs logo

Also on this site:

Articles about Newborn Screening

Genetic Tests: Insurers Should Pay
Philip R. Reilly & Greg Fish | 01/2008
BusinessWeek

Health insurance companies should foot the bill for genetic tests for diseases and other medical problems. Pro or con?

 

Addressing the Fallout Of Newborn Screening: Government and Researchers Seek to Reduce False Positives, Improve Physician Education and Follow-Up for Families
Shirley S. Wang | 10/30/2007

The recent adoption of widespread screening of newborns for congenital health problems is saving thousands of lives every year, identifying potentially deadly conditions in time to begin treatment. But now, health-care professionals recognize that success has highlighted glitches in the system.

More screening has meant more potential for erroneous test results and misdiagnoses, causing needless angst for parents. Doctors and hospital officials, who must inform new parents about the screening process, are often ill-informed about the diseases that are screened for and how they are treated. And once a diagnosis is confirmed, families may get little follow-up as they struggle with the overwhelming rigors of caring for their sick infant.

 

Does the end justify the genes?
Craig Westover | 07/26/2007
St. Paul Pioneer Press

Of all our natural rights, none is guarded more zealously than the right of personal privacy, especially when it involves private matters of personal health. Yet, as medical technology advances and public health costs demand action, the boundary between privacy rights and the "common good" is increasingly strained.

Genomics - the study of genes and their roles in disease - offers enormous potential for bettering public health and reducing health care costs. Those are worthy ends. But they require genetically screening a significant number of individuals for predisposition to disease. Using the coercive power of government to enforce genetic screening and research runs smack dab against the unalienable right of personal privacy.

 

Most U.S. Newborns Now Screened for Genetic Disease
07/11/07
Forbes Magazine

WEDNESDAY, July 11 (HealthDay News) -- Most American babies are now routinely tested at birth for an array of lethal or disabling genetic conditions, a new study from the March of Dimes finds.

 

Parents Support Genetic Testing, DNA Biobanks, Study Finds
06/28/2007
ScienceDaily

Genetic testing holds great promise for the future. Information generated by genetic testing may provide information that leads to new treatments for common diseases such as heart disease and diabetes.

But how do parents really feel about testing their child’s DNA for diseases that may not have an available treatment, and how willing are they to store their child’s DNA in a government biobank to help yield new strategies for disease treatment and prevention in the future?

 

Many applaud genetic-privacy measure
Amanda Battaglia | 02/06/2007
The Daily Iowan

Americans may no longer have to worry about security issues connected with information from genetic tests, which medical experts say could be the key to unlocking information that can diagnose certain diseases.

President Bush has urged Congress to pass the Genetic Information Nondiscrimination Act of 2007 - which is now in committee in the House - to bar health-insurance companies and employers from discriminating against people whose genetic tests show potential health problems.

 

The tandem mass spectrometry newborn screening experience in North Carolina: 1997–2005
D. M. Frazier D. S. Millington S. E. McCandless D. D. Koeberl S. D. Weavil S. H. Chaing J. Muenzer | 2006
Journal of Inherited Metabolic Disease

The impetus for developing North Carolina’s tandem mass spectrometry newborn screening programme (NC MS/MS NBS Program) came, in part, from the research interests of several of the state’s laboratory and clinical investigators. For the past 20 years, their research has contributed to a greater understanding of the role of carnitine in organic and fatty acid metabolism as well as the adaptation of mass spectrometry to both diagnostic testing and newborn screening.

 

Financing State Newborn Screening Programs: Sources and Uses of Funds
Kay Johnson, Michele A. Lloyd-Puryear, Marie Y. Mann, Lauren Raskin Ramos and Bradford L. Therrell | 2006
Pediatrics

Every state and the District of Columbia (hereafter referred to as states) have a newborn screening program designed to detect certain congenital conditions at or near birth and to link children to critical, and at times life-saving, early interventions. However, each state newborn screening program is unique in its administrative and financing structure. These differences reflect variations in public health infrastructure, medical care capacity, and legislative impact. This article examines the sources (revenues) and uses (expenditures) of funds for newborn screening programs, with consideration of program variations and trends.

 

Newborn Screening: Toward a Uniform Screening Panel and System
Michael S. Watson, PhD, Michele A. Lloyd-Puryear, MD, PhD, Marie Y. Mann, MD, MPH, Piero Rinaldo, MD, PhD, and R. Rodney Howell, MD, editors | 05/2006
Genetics in Medicine

States vary widely in their use of newborn screening tests, with some mandating screening for as few as three conditions and others mandating as many as 43 conditions, including varying numbers of the 40 conditions that can be detected by tandem mass spectrometry (MS/MS). There has been no national guidance on the best candidate conditions for newborn screening since the National Academy of Sciences report of 19751 and the United States Congress Office of Technology Assessment report of 1988,2 despite rapid developments since then in genetics, in screening technologies, and in some treatments.

 

'Newborn screening' benefits not so clear
Dr. Darshak Sanghavi  |  10/10/2005
New York Times

Last spring, a federal advisory panel recommended that all states expand ''newborn screening" to check for about 50 rare genetic disorders. The March of Dimes and American Academy of Pediatrics applauded this move as a victory for children's health, and most states now require expanded testing.

Without federal direction, states had varied widely in testing practices, with some states testing for fewer conditions than others. But a new technology -- tandem mass spectroscopy -- has made screening for large numbers of diseases faster and cheaper. The technology has outpaced medical knowledge, however, raising potential concerns.

 

States decide how to screen newborns for disorders
Rita Rubin | 07/11/2005
USA TODAY

Few new parents give even a passing thought to how thoroughly their resident state screens newborns for congenital disorders.

Typically, screening tests get parents' attention only in the rare case of an abnormal result — which, because of the false positives common with such tests, may not necessarily mean their baby has a problem. Further testing is needed for a definitive answer.

About 15,000 to 19,000 of the 4 million U.S. babies born each year have a treatable condition for which a screening test is available, says Jennifer Howse, president of the March of Dimes. Howse's organization today released its annual "report card" tallying screening tests offered by each state.

"These are rare disorders," Howse acknowledges. "But if it's your baby, then it's the world."

 

Screening Newborns: Cast a Wide Net
02/28/2005
New York Times Letter to the Editor

Since the mid-1960's, newborn screening programs have been so successful that screening is now routine for millions of babies born each year in the United States and in much of the world. "Panel to Advise Tests on Babies for 29 Diseases" (front page, Feb. 21) raises undue alarm about false positive screening test results.

 


UNC- Chapel Hill
[Home] [About the Center] [People] [Research Activities] [Ethics and Policy] [Training] [Outreach] [Publications] [External Links]

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.