2011 Kentucky Revised Statutes CHAPTER 214 DISEASES 214.155 Screening and tests for heritable disorders for newborns and infants -- Information provided to parent or guardian -- Application for federal grants -- Section cited as James William Lazzaro and Madison Leigh Heflin Newborn Screening Act.
KY Rev Stat § 214.155 (1996 through Reg Sess) What's This?
214.155 Screening and tests for heritable disorders for newborns and infants -Information provided to parent or guardian -- Application for federal grants -Section cited as James William Lazzaro and Madison Leigh Heflin Newborn
Screening Act.
(1)
(2)
(3)
(4)
The Cabinet for Health and Family Services shall operate a newborn screening
program for heritable disorders that includes but is not limited to procedures for
conducting initial newborn screening tests on infants twenty-eight (28) days or less
of age and definitive diagnostic evaluations provided by a state university-based
specialty clinic for infants whose initial screening tests resulted in a positive test.
The secretary of the cabinet shall, by administrative regulation promulgated
pursuant to KRS Chapter 13A:
(a) Prescribe the times and manner of obtaining a specimen and transferring a
specimen for testing;
(b) Prescribe the manner of testing specimens and recording and reporting the
results of newborn screening tests; and
(c) Establish and collect fees to support the newborn screening program.
The administrative officer or other person in charge of each institution caring for
infants twenty-eight (28) days or less of age and the person required in pursuance of
the provisions of KRS 213.046 shall register the birth of a child and cause to have
administered to every such infant or child in its or his care tests for heritable
disorders, including but not limited to phenylketonuria (PKU), sickle cell disease,
congenital hypothyroidism, galactosemia, medium-chain acyl-CoA dehydrogenase
deficiency (MCAD), very long-chain acyl-CoA deficiency (VLCAD), short-chain
acyl-CoA dehydrogenase deficiency (SCAD), maple syrup urine disease (MSUD),
congenital adrenal hyperplasia (CAH), biotinidase disorder, and cystic fibrosis (CF),
3-methylcrotonyl-CoA carboxylase deficiency (3MCC), 3-OH 3-CH3 glutaric
aciduria (HMG), argininosuccinic acidemia (ASA), beta-ketothiolase deficiency
(BKT), carnitine uptake defect (CUD), citrullinemia (CIT), glutaric acidemia type I
(GA I), Hb S/beta-thalassemia (Hb S/Th), Hb S/C disease (Hb S/C), homocystinuria
(HCY), isovaleric acidemia (IVA), long-chain L-3-OH acyl-CoA dehydrogenase
deficiency (LCAD), methylmalonic acidemia (Cbl A,B), methylmalonic acidemia
mutase deficiency (MUT), multiple carboxylase deficiency (MCD), propionic
acidemia (PA), trifunctional protein deficiency (TFP), and tyrosinemia type I (TYR
I). The listing of tests for heritable disorders to be performed shall include all
conditions consistent with the recommendations of the American College of
Medical Genetics.
Each health care provider of newborn care shall provide an infant's parent or
guardian with information about the newborn screening tests required under
subsection (2) of this section. The institution or health care provider shall arrange
for appropriate and timely follow-ups to the newborn screening tests, including but
not limited to additional diagnoses, evaluation, and treatment when indicated.
Nothing in this section shall be construed to require the testing of any child whose
parents are members of a nationally recognized and established church or religious
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(6)
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(8)
(9)
denomination, the teachings of which are opposed to medical tests, and who object
in writing to the testing of his or her child on that ground.
The cabinet shall make available the names and addresses of health care providers,
including but not limited to physicians, nurses, and nutritionists, who may provide
postpartum home visits to any family whose infant or child has tested positive for a
newborn screening test.
A parent or guardian shall be provided information by the institution or health care
provider of newborn care about the availability and costs of screening tests not
specified in subsection (2) of this section. The parent or guardian shall be
responsible for costs relating to additional screening tests performed under this
subsection, and these costs shall not be included in the fees established for the
cabinet's newborn screening program under subsection (1) of this section. All
positive results of additional screening of these tests shall be reported to the cabinet
by the institution or health care provider.
(a) For the purposes of this subsection, a qualified laboratory means a clinical
laboratory not operated by the cabinet that is accredited pursuant to 42 U.S.C.
sec. 263a, licensed to perform newborn screening testing in any state, and
reports its screening results using normal pediatric reference ranges.
(b) The cabinet shall enter into agreements with public or private qualified
laboratories to perform newborn screening tests if the laboratory operated by
the cabinet is unable to screen for a condition specified in subsection (2) of
this section.
(c) The cabinet may enter into agreements with public or private qualified
laboratories to perform testing for conditions not specified in subsection (2) of
this section. Any agreement entered into under this paragraph shall not
preclude an institution or health care provider from conducting newborn
screening tests for conditions not specified in subsection (2) of this section by
utilizing other public or private qualified laboratories.
The secretary for health and family services or his or her designee shall apply for
any federal funds or grants available through the Public Health Service Act and may
solicit and accept private funds to expand, improve, or evaluate programs to provide
screening, counseling, testing, or specialty services for newborns or children at risk
for heritable disorders.
This section shall be cited as the James William Lazzaro and Madison Leigh Heflin
Newborn Screening Act.
Effective: July 12, 2006
History: Amended 2006 Ky. Acts ch. 180, sec. 1, effective July 12, 2006. -- Amended
2005 Ky. Acts ch. 66, sec. 1, effective March 11, 2005; and ch. 99, sec. 450,
effective June 20, 2005. -- Amended 2001 Ky. Acts ch. 31, sec. 1, effective June 21,
2001. -- Amended 2000 Ky. Acts ch. 457, sec. 3, effective July 14, 2000. -- Amended
1998 Ky. Acts ch. 426, sec. 397, effective July 15, 1998. -- Amended 1990 Ky. Acts
ch. 369, sec. 35, effective July 13, 1990. -- Amended 1988 Ky. Acts ch. 277, sec. 1,
effective July 15, 1988. -- Amended 1986 Ky. Acts ch. 447, sec. 2, effective April
11, 1986. --Amended 1982 Ky. Acts ch. 39, sec. 1, effective July 15, 1982. --
Amended 1974 Ky. Acts ch. 74, Art. VI, sec. 107(2). -- Created 1966 Ky. Acts
ch. 45, sec. 1.
Legislative Research Commission Note (6/20/05). Under 2005 Ky. Acts ch. 184,
sec. 18, changes in the names of agencies and officers that are made in bills
confirming a reorganization of the executive branch are to be codified only to the
extent those changes do not conflict with other 2005 amendments. Accordingly, an
amendment to this section in Acts ch. 66 prevails over a name change made in Acts
ch. 99.
Legislative Research Commission Note (3/11/05). 2005 Ky. Acts chs. 11, 85, 95, 97,
98, 99, 123, and 181 instruct the Reviser of Statutes to correct statutory references to
agencies and officers whose names have been changed in 2005 legislation confirming
the reorganization of the executive branch. Such a correction has been made in this
section.
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