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  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