Bill Text: IA SSB3122 | 2021-2022 | 89th General Assembly | Introduced
Bill Title: A bill for an act relating to the newborn screening.(See SF 2345.)
Spectrum: Committee Bill
Status: (Introduced - Dead) 2022-02-17 - Committee report approving bill, renumbered as SF 2345. [SSB3122 Detail]
Download: Iowa-2021-SSB3122-Introduced.html
Senate
Study
Bill
3122
-
Introduced
SENATE
FILE
_____
BY
(PROPOSED
COMMITTEE
ON
HUMAN
RESOURCES
BILL
BY
CHAIRPERSON
EDLER)
A
BILL
FOR
An
Act
relating
to
the
newborn
screening.
1
BE
IT
ENACTED
BY
THE
GENERAL
ASSEMBLY
OF
THE
STATE
OF
IOWA:
2
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Section
1.
Section
136A.2,
Code
2022,
is
amended
by
adding
1
the
following
new
subsection:
2
NEW
SUBSECTION
.
1A.
“Congenital
and
inherited
disorders
3
advisory
committee”
or
“advisory
committee”
means
the
congenital
4
and
inherited
disorders
advisory
committee
created
in
this
5
chapter.
6
Sec.
2.
NEW
SECTION
.
136A.3A
Congenital
and
inherited
7
disorders
advisory
committee
established
——
process
for
addition
8
of
conditions
to
newborn
screening.
9
1.
A
congenital
and
inherited
disorders
advisory
committee
10
is
established
to
assist
the
center
for
congenital
and
11
inherited
disorders
and
the
department
in
the
development
of
12
programs
that
ensure
the
availability
and
access
to
quality
13
genetic
and
genomic
health
care
services
for
all
Iowans.
14
2.
The
members
of
the
advisory
committee
shall
be
appointed
15
by
the
director
and
shall
include
persons
with
relevant
16
expertise
and
interest
including
parent
representatives.
17
3.
The
advisory
committee
shall
assist
the
center
for
18
congenital
and
inherited
disorders
and
the
department
in
19
designating
the
conditions
to
be
included
in
the
newborn
20
screening
and
in
regularly
evaluating
the
effectiveness
and
21
appropriateness
of
the
newborn
screening.
22
4.
Within
twelve
months
of
the
addition
of
a
new
condition
23
to
the
federal
recommended
uniform
screening
panel,
the
24
advisory
committee
shall
consider
and
make
a
recommendation
25
to
the
department
regarding
inclusion
of
the
new
condition
in
26
the
newborn
screening,
including
the
current
newborn
screening
27
capacity
to
screen
for
the
new
condition
and
the
resources
28
necessary
to
screen
for
the
new
condition
going
forward.
29
If
the
advisory
committee
recommends
inclusion
of
a
new
30
condition,
the
department
shall
include
the
new
condition
in
31
the
newborn
screening
within
eighteen
months
of
receipt
of
the
32
recommendation,
subject
to
the
provision
of
necessary
newborn
33
screening
capacity
and
resources.
34
5.
The
department
shall
submit
a
status
report
to
the
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general
assembly,
annually,
by
December
31,
regarding
all
of
1
the
following:
2
a.
The
current
conditions
included
in
the
newborn
screening.
3
b.
Any
new
conditions
currently
under
consideration
or
4
recommended
by
the
advisory
committee
for
inclusion
in
the
5
newborn
screening.
6
c.
Any
new
conditions
considered
but
not
recommended
by
the
7
advisory
committee
in
the
prior
twelve-month
period
and
the
8
reason
for
not
recommending
any
such
conditions.
9
d.
Any
departmental
request
for
additional
program
capacity
10
or
resources
necessitated
by
the
inclusion
of
a
recommended
new
11
condition
in
the
newborn
screening.
12
e.
Any
delay
and
the
reason
for
the
delay
by
the
advisory
13
committee
in
complying
with
the
specified
twelve-month
time
14
frame
in
considering
or
recommending
the
inclusion
of
a
new
15
condition
in
the
newborn
screening
to
the
department.
16
f.
Any
delay
and
the
reason
for
the
delay
by
the
department
17
in
complying
with
the
specified
eighteen-month
time
frame
in
18
including
a
new
condition
in
the
newborn
screening
following
19
receipt
of
a
recommendation
from
the
advisory
committee
20
recommending
the
inclusion
of
such
condition.
21
Sec.
3.
Section
136A.5,
Code
2022,
is
amended
to
read
as
22
follows:
23
136A.5
Newborn
metabolic
screening.
24
1.
All
newborns
born
in
this
state
shall
be
screened
for
25
congenital
and
inherited
disorders
in
accordance
with
rules
26
adopted
by
the
department.
27
2.
An
attending
health
care
provider
shall
ensure
that
every
28
newborn
under
the
provider’s
care
is
screened
for
congenital
29
and
inherited
disorders
in
accordance
with
rules
adopted
by
the
30
department.
31
3.
This
section
does
not
apply
if
a
parent
objects
to
32
the
screening.
If
a
parent
objects
to
the
screening
of
a
33
newborn,
the
attending
health
care
provider
shall
document
the
34
refusal
in
the
newborn’s
medical
record
and
shall
obtain
a
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written
refusal
from
the
parent
and
report
the
refusal
to
the
1
department
as
provided
by
rule
of
the
department.
2
Sec.
4.
Section
136A.5A,
subsections
1
and
4,
Code
2022,
are
3
amended
to
read
as
follows:
4
1.
Each
newborn
born
in
this
state
shall
receive
a
critical
5
congenital
heart
disease
screening
by
pulse
oximetry
or
other
6
means
as
determined
by
rule,
in
conjunction
with
the
metabolic
7
newborn
screening
required
pursuant
to
section
136A.5
.
8
4.
Notwithstanding
any
provision
to
the
contrary,
the
9
results
of
each
newborn’s
critical
congenital
heart
disease
10
screening
shall
only
be
reported
in
a
manner
consistent
with
11
the
reporting
of
the
results
of
metabolic
newborn
screenings
12
pursuant
to
section
136A.5
if
funding
is
available
for
13
implementation
of
the
reporting
requirement.
14
EXPLANATION
15
The
inclusion
of
this
explanation
does
not
constitute
agreement
with
16
the
explanation’s
substance
by
the
members
of
the
general
assembly.
17
This
bill
relates
to
newborn
screenings.
18
The
bill
establishes,
in
Code,
the
congenital
and
inherited
19
disorders
advisory
committee
(advisory
committee),
which
20
currently
is
established
in
administrative
rules.
The
bill
21
provides,
as
is
provided
in
administrative
rules,
that
the
22
advisory
committee
is
established
to
assist
the
center
for
23
congenital
and
inherited
disorders
(center)
and
the
department
24
of
public
health
(DPH)
in
matters
relating
to
genetic
25
and
genomic
health
care
services
for
all
Iowans,
that
the
26
members
of
the
advisory
committee
shall
be
appointed
by
the
27
director
of
public
health,
that
the
members
shall
include
28
persons
with
relevant
expertise
and
interest
including
parent
29
representatives,
and
that
one
of
the
duties
of
the
advisory
30
committee
is
to
assist
the
center
and
DPH
in
designating
the
31
conditions
to
be
included
in
the
newborn
screening
and
in
32
regularly
evaluating
the
effectiveness
and
appropriateness
of
33
the
newborn
screening.
34
The
bill
specifically
requires
that
within
12
months
of
the
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addition
of
a
new
condition
to
the
federal
recommended
uniform
1
screening
panel,
the
advisory
committee
shall
consider
and
2
make
a
recommendation
to
DPH
regarding
inclusion
of
the
new
3
condition
in
the
newborn
screening,
including
current
newborn
4
screening
capacity
to
screen
for
the
new
condition
and
the
5
resources
necessary
to
screen
for
the
new
condition
going
6
forward.
If
the
advisory
committee
recommends
inclusion
of
7
a
new
condition,
DPH
shall
ensure
that
the
new
condition
is
8
included
in
the
newborn
screening
within
18
months
of
receipt
9
of
the
recommendation,
subject
to
the
provision
of
necessary
10
newborn
screening
capacity
and
resources.
11
The
bill
requires
DPH
to
submit
an
annual
report
to
the
12
general
assembly
by
December
31,
regarding
the
current
13
conditions
included
in
the
newborn
screening,
any
new
14
conditions
currently
under
consideration
or
recommended
by
the
15
advisory
committee
for
inclusion
in
the
newborn
screening,
any
16
new
conditions
considered
but
not
recommended
by
the
advisory
17
committee
in
the
prior
12-month
period
and
the
reason
for
not
18
recommending
any
such
conditions,
any
departmental
request
for
19
additional
newborn
screening
program
capacity
or
resources
20
necessitated
by
the
inclusion
of
a
recommended
new
condition
21
in
the
newborn
screening,
and
any
delay
and
the
reason
for
22
the
delay
by
the
advisory
committee
or
DPH
in
complying
with
23
the
specified
time
frames
for
considering
and
recommending
or
24
adding
a
new
condition
to
the
newborn
screening.
25
The
bill
also
changes
references
to
“newborn
metabolic
26
screening”
or
“metabolic
newborn
screening”
to
“newborn
27
screening”.
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