II. NEWBORN SCREENING PROGRAMS
Newborn Screening Programs are essential to public health practice in
the United States. Through NBS programs, early identification and treat-
ment of disease can reduce childhood morbidity and mortality rates by
providing an opportunity for early intervention and treatment.
5 The Centers
for Disease Control and Prevention (CDC) have recognized NBS as playing
an important role in public health achievements in the first ten years of the
While programs vary between states, newborn screenings generally involve a blood test and a hearing test.
7 The first heel stick blood sample is
performed between twenty-four and forty-eight hours of the newborn’s
birth, preferably before the newborn leaves the hospital.
8 A second screening is sometimes conducted between ten days and two weeks following
birth, traditionally at the newborn’s health care provider’s office.
9 In some
states, pulse oximetry is performed to test for critical congenital heart disease.
10 Today, state health labs throughout the United States screen approximately four-million babies annually as part of NBS programs.
11 Of these
four-million newborns, close to 12,500 are diagnosed with one of the twenty-nine conditions that are universally tested for in every state through NBS
State NBS programs date back to the early 1960s, when newborn screening was created to test infants for phenylketonuria (PKU).
13 PKU is caused
by a gene mutation that that interrupts the enzyme which breaks down phenylalanine, and the subsequent buildup of the substance in the body can
5. Ctrs. for Disease Control & Prevention, CDC Grand Rounds: Newborn Screening
and Improved Outcomes, 61 MORBIDITY & MORTALITY WKLY. REP. 390, 390 (2012),
6. Ctrs. for Disease Control & Prevention, Ten Great Public Health Achievements -
United States, 2001-2010, 60 MORBIDITY & MORTALITY WKLY. REP. 619, 620 (2011), available at http://www.cdc.gov/mmwr/pdf/wk/mm6019.pdf.
7. Nat’l Insts. of Health, How are newborn screening tests done? (reviewed Apr. 12,
10. Nat’l Newborn Screening & Genetics Res. Ctr., National Newborn Screening Status
Report (updated Jan. 6, 2013), http://genes-r-us.uthscsa.edu/sites/genes-r-us/files/
nbsdisorders.pdf; How are newborn screening tests done?, supra note 7.
11. Bill Malone, Newborn Screening at a Crossroads: What Happens if Congress Waits
to Act?, CLINICAL LABORATORY NEWS (2013), http://www.aacc.org/publications
/cln/2013/august/Pages/ Newborn-Screening.aspx. The four-million babies screened account
for more than ninety-eight percent of the babies born in the U.S. CDC Grand Rounds: Newborn Screening and Improved Outcomes, supra note 5.
12. CDC Grand Rounds: Newborn Screening and Improved Outcomes, supra note 5.
13. PRESIDENT’S COUNCIL ON BIOETHICS, supra note 1, at 1; Malone, supra note 11.