Newborn Screening Resources

Guide to Adding Conditions to State Newborn Screening Panels

Newborn screening is the practice of screening babies for certain harmful or potentially fatal metabolic and genetic conditions that are not otherwise apparent at birth. Though technology has made it possible to screen for an increasing number of conditions, evidence does not support screening for all detectable disorders. This resource contains guidance for decision makers to assess the value and feasibility of adding a condition/s to the state’s newborn screening panel.

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Legal Toolkit for Newborn Screening DBS

Newborn screening is a vital public health program that detects serious medical conditions that can cause devastating effects if treatment is not given prior to the onset of symptoms. Not all of the blood sample collected from newborns is used during routine screening, however, and after testing has been completed, many states retain the residual dried blood samples (DBS). This toolkit is intended to assist state policymakers to develop or improve policies for the use of DBS and related information

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HHS Announces Proposal to Improve Rules Protecting Human Research Subjects

The U.S. Department of Health and Human Services and 15 other Federal Departments and Agencies have announced proposed revisions to modernize, strengthen, and make more effective the Federal Policy for the Protection of Human Subjects that was promulgated as a Common Rule in 1991. 

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Newborn Screening Saves Lives Reauthorization Act Restricts Use of Residual Newborn Screening Blood Spots for Research

Newborn screening is an important public health program that detects rare but serious genetic and metabolic disorders before symptoms appear. The Newborn Screening Saves Lives Reauthorization Act of 2014 amends the Public Health Service Act to revise and extend a grant program for screening, counseling, and other services related to heritable disorders that can be detected in newborns.

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Law Things Considered

State legislatures across the country consider changes and additions to laws that would impact public health during the 2013 legislative season. Examples of laws introduced in a few states include those related to tobacco control, health agency accreditation and newborn screening.

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Critical Congenital Heart Defect & Pulse Oximetry Screening: A Public Health Law Opportunity

newborn

Critical Congenital Heart Defect (CCHD) is an umbrella term for seven congenital heart defects that are dangerous to newborn infants. Pulse oximetry screening is a non-invasive, low-cost procedure that can detect CCHDs, and a number of states have laws that make the screening mandatory.

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Newborn Screening Webinar Series

States that store and provide residual dried blood spots (DBS) from newborn screening for secondary uses in medical research, or are considering storage and secondary uses, may face an array of legal issues. This webinar series covers the legal, ethical and policy issues concerning the secondary uses of collected blood samples and associated data, ownership and control of samples and the samples as a "public asset" or resource to benefit the public.

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Fact Sheet: Critical Congenital Heart Defect Screening

Congenital heart defects impose a large burden on newborn health. Seven of these heart defects, called critical congenital heart defects (CCHDs), are especially concerning. Fortunately, screening for these defects can be done non-invasively with a pulse oximeter. Several states have policies or laws regarding the screening for CCHDs. This Critical Congenital Newborn Screening fact sheet examines laws and policies in the Network’s Northern Region as well as early adopters of a policy to screen for CCHDs.

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Between a Rock and a Hard Place: Implementing the Newborn Screening Court Ruling

Newborn Screening

The rulings in two court cases create policy challenges for a state health department in the storage and use of blood samples obtained from newborn screenings. How the health department delt with the implementation of the court decisions and implications for public health.

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Newborn Screening, Consent and Storage

Newborn Screening

Two bills are pending in the Texas legislature, House Bill 2110 and Committee Substitute House Bill 411 (companion bill, SB 507), that propose to change the way newborn screening is conducted in Texas and may set dangerous precedents for other states. These bills arose in response to privacy activists’ concerns about patient privacy rights in the state’s storage and use of materials containing DNA.

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