83R5840 AED-F
	By: Crownover	H.B. No. 740

	A BILL TO BE ENTITLED
	AN ACT
	relating to newborn screening for congenital heart defects.
	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
	SECTION 1.  Section 33.001, Health and Safety Code, is
	amended by amending Subdivision (1) and adding Subdivision (1-a) to
	read as follows:
	(1)  "Congenital heart defect" means an abnormality in
	the structure and function of the heart that exists at birth.
	(1-a)  "Heritable disease" means an inherited disease
	that may result in mental or physical retardation or death.
	SECTION 2.  Section 33.011, Health and Safety Code, is
	amended by amending Subsections (a-1) and (c) and adding Subsection
	(d) to read as follows:
	(a-1)  Except as provided by this subsection and to the
	extent funding is available for the screening, the department shall
	require newborn screening tests to screen for disorders listed as
	core and secondary conditions in the December 2011 Recommended
	Uniform Screening Panel of the Secretary's Advisory Committee on
	Heritable Disorders in Newborns and Children [core panel and in the
	secondary targets of the uniform newborn screening panel
	recommended in the 2005 report by the American College of Medical
	Genetics entitled "Newborn Screening: Toward a Uniform Screening
	Panel and System"] or other recommendation [another report]
	determined by the department to provide more stringent newborn
	screening guidelines to protect the health and welfare of this
	state's newborns.  The department, with the advice of the Newborn
	Screening Advisory Committee, may require additional newborn
	screening tests under this subsection to screen for other disorders
	or conditions.  The department may exclude from the newborn
	screening tests required under this subsection screenings for
	galactose epimerase and galactokinase.
	(c)  Except as provided by Subsection (d), the [The]
	screening tests required by this section must be performed by the
	laboratory established by the department or by a laboratory
	approved by the department under Section 33.016.
	(d)  The department may authorize a screening test,
	including a screening for congenital heart defects, to be performed
	at a health care facility that provides newborn infant care and that
	complies with the test procedures and the standards of accuracy and
	precision required by the department for each screening test.
	SECTION 3.  Sections 33.0111(a), (b), and (f), Health and
	Safety Code, are amended to read as follows:
	(a)  The department shall develop a disclosure statement
	that clearly discloses to the parent, managing conservator, or
	guardian of a newborn child subjected to screening tests under
	Section 33.011:
	(1)  that the department, any health care facility
	authorized to perform the tests, or a laboratory established or
	approved by the department under Section 33.016 may retain for use
	by the department, health care facility, or laboratory genetic
	material used to conduct the newborn screening tests and discloses
	how the material is managed and used subject to this section and
	Sections 33.0112 and 33.018 [33.017]; [and]
	(2)  that reports, records, and information obtained by
	the department under this chapter that do not identify a child or
	the family of a child will not be released for public health
	research purposes under Section 33.018(c-1) [33.017(c-1)] unless a
	parent, managing conservator, or guardian of the child consents to
	disclosure; and
	(3)  that newborn screening blood spots and associated
	data are confidential under law and may only be used as described by
	Section 33.018 [33.017].
	(b)  The disclosure statement required by Subsection (a)
	must be included on the form developed by the department to inform
	parents about newborn screening.  The disclosure statement must:
	(1)   be in a format that allows a parent, managing
	conservator, or guardian of a newborn child to consent to
	disclosure under Section 33.018(c-1) [33.017(c-1)];
	(2)  include instructions on how to complete the
	portions of the form described by Subdivision (1);
	(3)  include the department's mailing address; and
	(4)  describe how a parent, managing conservator, or
	guardian of a newborn child may obtain information regarding
	consent through alternative sources.
	(f)  This section does not supersede the requirements
	imposed by Section 33.018 [33.017].
	SECTION 4.  Section 33.014(a), Health and Safety Code, is
	amended to read as follows:
	(a)  If, because of an analysis of a specimen submitted under
	Section 33.011, the department reasonably suspects that a newborn
	child may have phenylketonuria, another heritable disease,
	hypothyroidism, or another disorder for which the screening tests
	are required, the department shall notify the person who submits
	the specimen that the results are abnormal and provide the test
	results to that person.  The department may notify one or more of
	the following that the results of the analysis or of a screening
	test reported to the department under Section 33.015 are abnormal
	and recommend further testing when necessary:
	(1)  the physician attending the newborn child or the
	physician's designee;
	(2)  the person attending the delivery of the newborn
	child that was not attended by a physician;
	(3)  the parents of the newborn child;
	(4)  the health authority of the jurisdiction in which
	the newborn child was born or in which the child resides, if known;
	or
	(5)  physicians who are cooperating pediatric
	specialists for the program.
	SECTION 5.  Section 33.017(c), Health and Safety Code, is
	amended to read as follows:
	(c)  The advisory committee shall advise the department
	regarding strategic planning, policy, rules, and services related
	to newborn screening and additional newborn screening tests for
	each disorder included in the list described by Section
	33.011(a-1).
	SECTION 6.  Section 33.0111(g), Health and Safety Code, is
	repealed.
	SECTION 7.  As soon as practicable after the effective date
	of this Act, the Department of State Health Services shall
	implement the changes in law made by this Act to the newborn
	screening program under Chapter 33, Health and Safety Code.
	SECTION 8.  This Act takes effect September 1, 2013.