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<leg xml:space="preserve" billnum="SB0060" sponsor="David P. Hinkins" designation="SB" otherSponsor="" otherHouse="House" subNumber="01" subSponsor="David P. Hinkins" sess="2025GS" fileno="2025FL0711" date="01-30-25" printDate="01-30 16:51" subVer="1" minVer="0" office="LEGISLATIVE GENERAL COUNSEL" actionDate="" impact="code"><info><nextbuid>3</nextbuid><aminfo anum="0" effdate="05/07/2025"><seclist><sect action="A" src="code" buid="1" uid="C26B-4-S319_2025050720250507" fromuid="C26B-4-S319_2023050320230503" sort="26B04 03190020250507" mtype="section" effdate="05/07/2025">26B-4-319</sect><sect src="uncod" untype="effdate" buid="2" uid="EF0000" sort="UZEFF" mtype="uncod" effdate="05/07/2025"/></seclist></aminfo></info><tbox><sinfo/><st numlevel="1" lineno="1" slineno="0-1">Newborn Testing Amendments</st><sessionhead>2025 GENERAL SESSION</sessionhead><statehead>STATE OF UTAH</statehead><sponsorhead>Chief Sponsor: David P. Hinkins</sponsorhead><otherSponsorhead>House Sponsor: </otherSponsorhead></tbox><lt numlevel="1" lineno="2" slineno="0-2"><lthead lineno="3">LONG TITLE</lthead><gdhead lineno="4">General Description:</gdhead><gd numlevel="1" lineno="5" slineno="0-5">This bill amends provisions related to newborn screening.</gd><hphead lineno="6">Highlighted Provisions:</hphead><hp numlevel="1" lineno="7" slineno="0-7">This bill:<hl numlevel="1" lineno="8" slineno="0-8" level="1">requires the Department of Health and Human Services to screen newborns for pyruvate <ln numlevel="1" lineno="9" slineno="0-9"/>dehydrogenase complex deficiency;</hl><hl numlevel="1" lineno="10" slineno="0-10" level="1">amends provisions related to hearing loss testing; and</hl><hl numlevel="1" lineno="11" slineno="0-11" level="1">makes technical changes.</hl></hp><moni numlevel="1" lineno="12" slineno="0-12" display="none">Money Appropriated in this Bill:</moni><moniNone lineno="13">None</moniNone><oc numlevel="1" lineno="14" slineno="0-14">Other Special Clauses:</oc><ocNone lineno="15">None</ocNone><sa numlevel="1" lineno="16" slineno="0-16">Utah Code Sections Affected:<saamd numlevel="1" lineno="17" slineno="0-17"><snhead>AMENDS:</snhead><sn num="26B-4-319" src="code" uid="C26B-4-S319_2025050720250507" buid="1" sort="26B04 03190020250507" numlevel="1" lineno="18" slineno="0-18"><bold>26B-4-319</bold>, as renumbered and amended by Laws of Utah 2023, Chapter 307</sn></saamd></sa></lt><enacthead lineno="19"/><enact numlevel="1" lineno="20" slineno="0-20">Be it enacted by the Legislature of the state of Utah:</enact><bdy><bsec buid="1" num="26B-4-319" type="amend" src="code" uid="C26B-4-S319_2025050720250507" sort="26B04 03190020250507" numlevel="1" lineno="21" slineno="1-1" sn="1"><section number="26B-4-319" numlevel="1" lineno="22" slineno="1-2" type="amend"><secline lineno="21">Section 1, Section <bold>26B-4-319</bold> is amended to read:</secline><catline lineno="22"><bold>26B-4-319. Testing of newborn infants.</bold></catline><subsection ssid="1-1-1" dnum="1-o" numlevel="1" lineno="23" slineno="1-3" level="1" placement="noreturn"><display>(1)</display>Except in the case where parents object on the grounds that they are members of a <ln numlevel="1" lineno="24" slineno="1-4"/>specified, well-recognized religious organization whose teachings are contrary to the <ln numlevel="1" lineno="25" slineno="1-5"/>tests required by this section, a newborn infant shall be tested for:<subsection ssid="1-1-2" dnum="a-o" numlevel="1" lineno="26" slineno="1-6" level="2"><display>(a)</display>phenylketonuria (PKU);</subsection><subsection ssid="1-26" dnum="_-o:b-i" numlevel="1" lineno="27" slineno="1-7" ea="amend" anum="0" owner="jchristopherson" style="1" level="2"><display><amend anum="0" ea="amend" pairid="1002" style="1" owner="i" level="1" amendtag="start">(b)</amend></display><amend anum="0" ea="amend" pairid="9" groupid="7" style="1" owner="jchristopherson" level="1" amendtag="end">pyruvate dehydrogenase complex deficiency (PDCD) if there is:</amend><subsection ssid="1-29" dnum="_-o:i-i" numlevel="1" lineno="28" slineno="1-8" ea="amend" anum="0" owner="jchristopherson" style="1" level="3"><display><amend anum="0" ea="amend" pairid="1003" style="1" owner="i" level="1" amendtag="start">(i)</amend></display><amend anum="0" ea="amend" pairid="34" groupid="26" style="1" owner="jchristopherson" level="1" amendtag="end">a preventative measure or treatment available; and</amend></subsection><subsection ssid="1-30" dnum="_-o:ii-i" numlevel="1" lineno="29" slineno="1-9" ea="amend" anum="0" owner="jchristopherson" style="1" level="3"><display><amend anum="0" ea="amend" pairid="1004" style="1" owner="i" level="1" amendtag="start">(ii)</amend></display><amend anum="0" ea="amend" pairid="37" groupid="28" style="1" owner="jchristopherson" level="1" amendtag="end">a reliable laboratory diagnostic test method;</amend></subsection></subsection><subsection ssid="1-1-3" dnum="b-o:c-i" numlevel="1" lineno="30" slineno="1-10" level="2"><display><amendoutstart style="2"/><amend anum="0" ea="erase" pairid="1005" style="2" owner="o" level="1" deltag="both">(b)</amend><amendoutend style="2"/><amend anum="0" ea="amend" pairid="1006" style="1" owner="i" level="1" amendtag="both" space="true">(c)</amend></display>other heritable disorders which may result in an intellectual or physical disability <ln numlevel="1" lineno="31" slineno="1-11"/>or death and for which:<subsection ssid="1-1-4" dnum="i-o" numlevel="1" lineno="32" slineno="1-12" level="3"><display>(i)</display>a preventive measure or treatment is available; and</subsection><subsection ssid="1-1-5" dnum="ii-o" numlevel="1" lineno="33" slineno="1-13" level="3"><display>(ii)</display>there exists a reliable laboratory diagnostic test method;</subsection></subsection><subsection ssid="1-27" dnum="_-o:d-i" numlevel="1" lineno="34" slineno="1-14" ea="amend" anum="0" owner="jchristopherson" style="1" level="2"><display><amend anum="0" ea="amend" pairid="1008" style="1" owner="i" level="1" amendtag="start">(d)</amend></display><amend anum="0" ea="amend" pairid="26" groupid="20" style="1" owner="jchristopherson" level="1" amendtag="end">hearing loss; and</amend></subsection><subsection ssid="1-1-6" dnum="c-o:_-i" numlevel="1" lineno="35" slineno="1-15" ea="erase" anum="0" owner="jchristopherson" style="2" level="2" space="false"><display><amendoutstart style="2"/><amend anum="0" ea="erase" pairid="1009" style="2" owner="o" level="1" deltag="start">(c)</amend></display><subsection ssid="1-1-7" dnum="i-o:_-i" ea="erase" anum="0" owner="jchristopherson" style="2" level="3" placement="sameline"><display><amend anum="0" ea="erase" pairid="1010" style="2" owner="o" level="1">(i)</amend></display><amend anum="0" ea="erase" pairid="16" groupid="13" style="2" owner="jchristopherson" level="1" deltag="end">an infant born in a hospital with 100 or more live births annually, hearing <ln numlevel="1" lineno="36" slineno="1-16"/>loss; and</amend><amendoutend style="2"/></subsection><subsection ssid="1-1-8" dnum="ii-o:_-i" numlevel="1" lineno="37" slineno="1-17" ea="erase" anum="0" owner="jchristopherson" style="2" level="3"><display><amendoutstart style="2"/><amend anum="0" ea="erase" pairid="1011" style="2" owner="o" level="1" deltag="start">(ii)</amend></display><amend anum="0" ea="erase" pairid="20" groupid="16" style="2" owner="jchristopherson" level="1" deltag="end">an infant born in a setting other than a hospital with 100 or more live births <ln numlevel="1" lineno="38" slineno="1-18"/>annually, hearing loss; and</amend><amendoutend style="2"/></subsection></subsection><subsection ssid="1-1-9" dnum="d-o:e-i" numlevel="1" lineno="39" slineno="1-19" level="2"><display><amendoutstart style="2"/><amend anum="0" ea="erase" pairid="1012" style="2" owner="o" level="1" deltag="both">(d)</amend><amendoutend style="2"/><amend anum="0" ea="amend" pairid="1013" style="1" owner="i" level="1" amendtag="both" space="true">(e)</amend></display>critical congenital heart defects using pulse oximetry.</subsection></subsection><subsection ssid="1-1-10" dnum="2-o" numlevel="1" lineno="40" slineno="1-20" level="1"><display>(2)</display>In accordance with Section <xref depth="3" refnumber="26B-1-209" start="0">26B-1-209</xref>, the department may charge fees for:<subsection ssid="1-1-11" dnum="a-o" numlevel="1" lineno="41" slineno="1-21" level="2"><display>(a)</display>materials supplied by the department to conduct tests required under Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref>;</subsection><subsection ssid="1-1-12" dnum="b-o" numlevel="1" lineno="42" slineno="1-22" level="2"><display>(b)</display>tests required under Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref> conducted by the department;</subsection><subsection ssid="1-1-13" dnum="c-o" numlevel="1" lineno="43" slineno="1-23" level="2"><display>(c)</display>laboratory analyses by the department of tests conducted under Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref>; and</subsection><subsection ssid="1-1-14" dnum="d-o" numlevel="1" lineno="44" slineno="1-24" level="2"><display>(d)</display>the administrative cost of follow-up contacts with the parents or guardians of tested <ln numlevel="1" lineno="45" slineno="1-25"/>infants.</subsection></subsection><subsection ssid="1-1-15" dnum="3-o" numlevel="1" lineno="46" slineno="1-26" level="1"><display>(3)</display>Tests for hearing loss described in Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref> shall be based on one or more <ln numlevel="1" lineno="47" slineno="1-27"/>methods approved by the Newborn Hearing Screening Committee created in Section <xref depth="3" refnumber="26B-1-432" start="0"><ln numlevel="1" lineno="48" slineno="1-28"/>26B-1-432</xref>, including:<subsection ssid="1-1-16" dnum="a-o" numlevel="1" lineno="49" slineno="1-29" level="2"><display>(a)</display>auditory brainstem response;</subsection><subsection ssid="1-1-17" dnum="b-o" numlevel="1" lineno="50" slineno="1-30" level="2"><display>(b)</display>automated auditory brainstem response; and</subsection><subsection ssid="1-1-18" dnum="c-o" numlevel="1" lineno="51" slineno="1-31" level="2"><display>(c)</display>evoked otoacoustic emissions.</subsection></subsection><subsection ssid="1-1-19" dnum="4-o" numlevel="1" lineno="52" slineno="1-32" level="1"><display>(4)</display>Results of tests for hearing loss described in Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref> shall be reported to:<subsection ssid="1-1-20" dnum="a-o" numlevel="1" lineno="53" slineno="1-33" level="2"><display>(a)</display>the department; and</subsection><subsection ssid="1-1-21" dnum="b-o" numlevel="1" lineno="54" slineno="1-34" level="2"><display>(b)</display>when results of tests for hearing loss under Subsection <xref depth="4" refnumber="26B-4-319(1)" start="0">(1)</xref> suggest that additional <ln numlevel="1" lineno="55" slineno="1-35"/>diagnostic procedures or medical interventions are necessary:<subsection ssid="1-1-22" dnum="i-o" numlevel="1" lineno="56" slineno="1-36" level="3"><display>(i)</display>a parent or guardian of the infant;</subsection><subsection ssid="1-1-23" dnum="ii-o" numlevel="1" lineno="57" slineno="1-37" level="3"><display>(ii)</display>an early intervention program administered by the department in accordance with <ln numlevel="1" lineno="58" slineno="1-38"/>Part C of the Individuals with Disabilities Education Act, 20 U.S.C. Sec. 1431 et <ln numlevel="1" lineno="59" slineno="1-39"/>seq.; and</subsection><subsection ssid="1-1-24" dnum="iii-o" numlevel="1" lineno="60" slineno="1-40" level="3"><display>(iii)</display>the Utah Schools for the Deaf and the Blind, created in Section <xref depth="3" refnumber="53E-8-201" start="0">53E-8-201</xref>.</subsection></subsection></subsection></section></bsec><bsec buid="2" type="uncod" untype="effdate" src="uncod" uid="EF0000" sort="UZEFF" langlock="true" numlevel="1" lineno="61" slineno="2-1" sn="2"><section type="uncod" untype="effdate" display="false" src="uncod"><secline lineno="61">Section 2.  <bold>Effective Date.</bold></secline><sectionText lineno="62"><amend anum="0" ea="amend" pairid="1" groupid="1" style="1" owner="jchristopherson" level="1" amendtag="both">This bill takes effect on <effdate uid="code" date="5/7/2025">May 7, 2025</effdate>.</amend></sectionText></section></bsec></bdy><foot><rev><tm>1-30-25 4:51 PM</tm></rev></foot></leg>