BILL NUMBER: AB 1307	AMENDED
	BILL TEXT

	AMENDED IN ASSEMBLY  MAY 5, 2009
	AMENDED IN ASSEMBLY  APRIL 22, 2009

INTRODUCED BY   Assembly Member Buchanan
   (Coauthors: Assembly Members Portantino and Torres)

                        FEBRUARY 27, 2009

   An act to amend Section 125001 of the Health and Safety Code,
relating to newborn screening, and making an appropriation thereof.


	LEGISLATIVE COUNSEL'S DIGEST


   AB 1307, as amended, Buchanan. Newborn genetic screening.
   Existing law requires that the State Department of Public Health
establish a statewide program for the screening of newborns for
specified genetic disorders, including tandem mass spectrometry
screening for fatty acid oxidation, amino acid, and organic acid
disorders and congenital adrenal hyperplasia. Existing law creates
the Genetic Disease Testing Fund in the State Treasury, which is used
to fund the newborn screening program.
   This bill would require  , prior to January 1, 2011, the
statewide screening program to also include all conditions
recommended by the American College of Medical Genetics (ACMG) as of
January 1, 2010. This bill would also require  the
department to consider  future   inclusion in
the statewide screening program of  conditions recommended by
the  ACMG   American College of Medical Genetics
(ACMG)  or other specified entities. The department would be
required to adopt the recommendations  , as specified,
  within one year of their publication  unless the
department determines that  screening for  the recommended
conditions  are   is  not necessary for
advancing newborn health and notifies appropriate committees of the
Legislature of that determination. Because this bill would expand the
purposes of the screening program it constitutes an appropriation.
   Vote: majority. Appropriation: yes. Fiscal committee: yes.
State-mandated local program: no.


THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:

  SECTION 1.  Section 125001 of the Health and Safety Code is amended
to read:
   125001.  (a) The department shall establish a program for the
development, provision, and evaluation of genetic disease testing,
and may provide laboratory testing facilities or make grants to,
contract with, or make payments to, any laboratory that it deems
qualified and cost-effective to conduct testing or with any metabolic
specialty clinic to provide necessary treatment with qualified
specialists. The program shall provide genetic screening and followup
services for persons who have the screening.
   (b) (1) The department shall, prior to January 1, 2011, expand
statewide screening of newborns to include tandem mass spectrometry
screening for fatty acid oxidation, amino acid, and organic acid
disorders, and congenital adrenal hyperplasia  , as well as
all conditions recommended by the American College of Medical
Genetics (ACMG) as of January 1, 2010. The  
   (2) The department shall also consider including, in the statewide
screening program, conditions included in the most recent
recommendations of the American College of Medical Genetics (ACMG),
as defined by inclusion on the core panel or as secondary targets, or
for conditions recommended by another advisory body, appointed by
the federal Secretary of Health and Human Services, to make
recommendations for newborn screening programs. The department shall
implement screening for the recommended conditions within one year of
the publication of the recommendations unless the department
determines that screening for a specific condition is not necessary
for the advancement of newborn health and notifies the appropriate
committees of the Legislature of the determination. 
    (c)     The  department shall provide
information with respect to  these disorders  
disorders included in the statewide screening program  and
available testing resources to all women receiving prenatal care and
to all women admitted to a hospital for delivery. If the department
is unable to provide this statewide screening by August 1, 2005, the
department shall temporarily obtain these testing services through a
competitive bid process from one or more public or private
laboratories that meet the department's requirements for testing,
quality assurance, and reporting. If the department determines that
contracting for these services is more cost-effective, and meets the
other requirements of this chapter, than purchasing the tandem mass
spectrometry equipment themselves, the department shall contract with
one or more public or private laboratories. 
   (2) Commencing January 1, 2010, the department shall consider
additional conditions for screening, as recommended by the ACMG or
other governing body appointed to convene, discuss, and establish
recommendations for newborn screening programs and approved by the
United States Secretary of Health and Human Services. The department
shall adopt the recommended conditions for screening, within one year
of receipt of the recommendations, unless the department determines
that the screening for the recommended condition is not necessary for
advancing newborn health, and notifies the appropriate committees of
jurisdiction in the Legislature of this determination. 

   (c) 
    (d)  The department shall report to the Legislature
regarding the progress of the program on or before July 1, 2006. The
report shall include the costs for screening, followup, and treatment
as compared to costs and morbidity averted for each condition tested
for in the program.