H.B. No. 740

	AN ACT
	relating to newborn screening for critical congenital heart disease
	and other disorders.
	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
	SECTION 1.  This Act shall be known as the Taryn Kennedy,
	Nash Sievers, and Rex Van de Putte Act.
	SECTION 2.  Section 33.001, Health and Safety Code, is
	amended by amending Subdivision (1) and adding Subdivisions (1-a)
	and (1-b) to read as follows:
	(1)  "Birthing facility" means an inpatient or
	ambulatory health care facility that offers obstetrical or newborn
	care services.  The term includes:
	(A)  a hospital licensed under Chapter 241 that
	offers obstetrical services;
	(B)  a birthing center licensed under Chapter 244;
	(C)  a children's hospital; or
	(D)  a facility that provides obstetrical
	services and is maintained and operated by this state or an agency
	of this state.
	(1-a)  "Critical congenital heart disease" means an
	abnormality in the structure or function of the heart that exists at
	birth, causes severe, life-threatening symptoms, and requires
	medical intervention within the first few hours, days, or months of
	life.
	(1-b)  "Heritable disease" means an inherited disease
	that may result in mental or physical retardation or death.
	SECTION 3.  Section 33.011, Health and Safety Code, is
	amended by amending Subsections (a), (a-1), and (c) and adding
	Subsections (d), (e), and (f) to read as follows:
	(a)  The physician attending a newborn child or the person
	attending the delivery of a newborn child that is not attended by a
	physician shall cause the child to be subjected [subject the child]
	to screening tests approved by the department for phenylketonuria,
	other heritable diseases, hypothyroidism, and other disorders for
	which screening is required by the department.
	(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 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, with the advice of the Newborn Screening
	Advisory Committee, shall authorize a screening test for critical
	congenital heart disease to be performed at a birthing facility
	that provides care to newborn patients and that complies with the
	test procedures and the standards of accuracy and precision
	required by the department for each screening test.
	(e)  If the department under Subsection (d) authorizes the
	performance at a birthing facility of a screening test for critical
	congenital heart disease, a birthing facility must perform the
	screening test on each newborn who is a patient of the facility
	before the newborn is discharged from the facility unless:
	(1)  the parent declines the screening;
	(2)  the newborn is transferred to another facility
	before the screening test is performed;
	(3)  the screening test has previously been completed;
	or
	(4)  the newborn is discharged from the birthing
	facility not more than 10 hours after birth and a referral for the
	newborn was made to another birthing facility, physician, or health
	care provider.
	(f)  Before requiring any additional screening test for
	critical congenital heart disease, the department must review the
	necessity of the additional screening test, including an assessment
	of the test implementation costs to the department, birthing
	facilities, and other health care providers.
	SECTION 4.  Section 33.0111, Health and Safety Code, is
	amended by amending Subsections (a), (b), and (f) and adding
	Subsection (h) 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 or a laboratory established or
	approved by the department under Section 33.016 may retain for use
	by the department 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].
	(h)  Nothing in this section prohibits a physician attending
	a newborn child from delegating the physician's responsibilities
	under this section to any qualified and properly trained person
	acting under the physician's supervision.
	SECTION 5.  Section 33.015(a), Health and Safety Code, is
	amended to read as follows:
	(a)  Each physician, health authority, birthing facility, or
	other individual who has the information of a confirmed case of a
	disorder for which a screening test is required that has been
	detected by a mechanism other than identification through a
	screening of a specimen by the department's diagnostic laboratory
	shall report the confirmed case to the department.
	SECTION 6.  Sections 33.017(b) and (c), Health and Safety
	Code, are amended to read as follows:
	(b)  The advisory committee consists of members appointed by
	the commissioner of state health services.  The advisory committee
	must include the following members:
	(1)  at least four physicians licensed to practice
	medicine in this state, including at least two physicians
	specializing in neonatal-perinatal medicine [health care
	providers];
	(2)  at least two [a] hospital representatives
	[representative];
	(3)  at least two persons who have family members
	affected by a condition for which newborn screening is or may be
	required under this subchapter; and
	(4)  at least two health care providers [persons] who
	are involved in the delivery of newborn screening services,
	follow-up, or treatment in this state.
	(c)  The advisory committee shall:
	(1)  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); and
	(2)  review the necessity of requiring additional
	screening tests, including an assessment of the test implementation
	costs to the department, birthing facilities, and other health care
	providers.
	SECTION 7.  Section 33.0111(g), Health and Safety Code, is
	repealed.
	SECTION 8.  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 9.  (a)  The change in law made by this Act in
	amending Section 33.017, Health and Safety Code, regarding the
	qualifications of members of the Newborn Screening Advisory
	Committee does not affect the entitlement of a member serving on the
	committee immediately before the effective date of this Act to
	continue to serve as a member of the committee for the remainder of
	the member's term. The change in law applies only to a member
	appointed on or after the effective date of this Act.
	(b)  As soon as practicable after the effective date of this
	Act, the commissioner of state health services shall appoint the
	additional committee members required by Section 33.017, Health and
	Safety Code, as amended by this Act.
	SECTION 10.  This Act takes effect September 1, 2013.
	______________________________	______________________________
	President of the Senate	Speaker of the House
	I certify that H.B. No. 740 was passed by the House on April
	24, 2013, by the following vote:  Yeas 141, Nays 2, 1 present, not
	voting; and that the House concurred in Senate amendments to H.B.
	No. 740 on May 15, 2013, by the following vote:  Yeas 143, Nays 1, 2
	present, not voting.
	______________________________
	Chief Clerk of the House
	I certify that H.B. No. 740 was passed by the Senate, with
	amendments, on May 13, 2013, by the following vote:  Yeas 31, Nays
	0.
	______________________________
	Secretary of the Senate
	APPROVED: __________________
	Date
	__________________
	Governor