Chapter 116
2003 -- H 5389 SUBSTITUTE B
Enacted 07/07/03
A N A C T
RELATING
TO HEALTH AND SAFETY -- BIRTH DEFECTS SURVEILLANCE SYSTEM
Introduced
By: Representatives Naughton, Sherlock, Kennedy, Carter, and Lewiss
Date
Introduced: February 04, 2003
It
is enacted by the General Assembly as follows:
SECTION
1. Title 23 of the General Laws entitled "Health and Safety" is
hereby
amended
by adding thereto the following chapter:
CHAPTER
13.3
BIRTH
DEFECTS SURVEILLANCE AND INFORMATION SYSTEM
23-13.3-1-
Preamble to birth defects surveillance and information system. --
Whereas
birth defects are a major cause of infants deaths and childhood disabilities;
and whereas
early
recognition and response to birth defects often prevents more serious effects;
and whereas
the
epidemiological patterns of specific birth defects may provide keys to improved
birth
outcomes.
An active birth defects surveillance and information system is essential to
developing
programs
and disseminating information that can reduce birth defects and infant
mortality. An
active
birth defects surveillance and information system serves to:
(a)
Describe occurrence of birth defects in the newborn and children up to five;
(b)
Detect trends of morbidity and mortality, stimulate epidemiological research
diminish
the
impact of birth defects and infant mortality;
(c)
Identify newborns and children with birth defects to intervene on a timely
basis for
treatment.
23-13.3-2.
Definitions. -- (a) “Birth Defects” means a physical or mental
functional
deficit
or impairment resulting from one or more genetic or environmental causes
detected in a
newborn
or before a child's fifth birthday.
(b)
“Council” means the birth defects surveillance and information advisory
council.
(c)
“Department” means the Rhode Island department of health.
(d)
“Director” means the director of the department of health.
23-13.3-3.
Statewide birth defects surveillance and information system. --
(a)
The director shall establish and implement not later than one year after
passage of this
act
a statewide birth defects reporting, surveillance and information system for
the collection of
information
concerning birth defects of newborns and spontaneous fetal deaths. The director
shall
establish
the types of birth defects to be reported, reporting requirements and
confidentiality
standards.
(b)
The director shall require the reporting of birth defects and the submission of
any
specified
additional information on cases necessary and appropriate for the recognition
of birth
defects
and to conduct epidemiological surveys of birth defects.
(c)
The birth defects surveillance and information system shall maintain
comprehensive
records
of all reports submitted pursuant to this section. These reports shall be
confidential in
accordance
with chapter 37.3 of title 5 and subject to the restrictions on release
incorporated in
that
chapter. Provided, however: (1) any such information shall be available only
for the
purposes
of this chapter; and (2) any data requested for demographic or epidemiological
studies
shall
be provided in a format without individually identifiable information.
(d)
The department shall maintain a public listing of any nondepartmental employees
who
are given access to identifiable information in the surveillance and
information system. The
listing
shall include: the name of the person authorizing access; the name, title and
organizational
affiliation
of each person given access; the date of access; and the specific purpose for
which the
information
was used.
(e)
Nothing in this section shall be construed to compel any individual to submit
to
medical
or department examination or supervision.
(f)
The director shall make rules and regulations that are necessary to implement
the
provision
of this section pursuant to chapter 35 of title 42.
(g)
The department shall not require the reporting of information or entering of
information
into the birth defects surveillance and information system regarding birth
defects of a
child
whose parents or legal guardian objects.
(h)
Parents and/or guardians shall have the right to prohibit the release of
individually
identifiable
information on their children from the birth defects surveillance and
information
system,
and shall have the right to prohibit being contacted by the Birth Defects
Surveillance
Program.
(i)
The department shall provide timely notification to parents and/or guardians of
their
rights
under subsections (g) and (h).
23-13.3-4.
Advisory Council. -- (a) Not later than thirty (30) days after the
effective date
of
this act, the director shall appoint a council to advise the department on the
establishment and
implementation
of the birth defects reporting, surveillance and information system.
(b)
The council shall recommend to the director a list of birth defects to be
reported to the
surveillance
system.
(c)
The council shall include not more than fifteen (15) persons who collectively
bring
the
following expertise: (1) representative of the Children’s Cabinet; (2) health
care services; (3)
the
Rhode Island March of Dimes and other community organizations concerned with
birth
defects;
(4) parents of children with birth defects; and (5) the public.
(d)
Members may serve for two (2) three (3) year terms. Terms for each appointee
begin
at
the initial appointment date.
(e)
Not later than thirty (30) days after the initial appointments are made the director
shall
convene
the first meeting of the council. In consultation with and with the approval of
the
council,
the director shall appoint, at the first meeting of the council, the
chairperson and vice
chairperson
of the council from among the members of the council. The chairperson may call
additional
meetings, as the chairperson considers appropriate.
(f)
The council may establish rules of procedure as necessary to facilitate the
council’s
orderly
conduct of business.
(g)
Council members shall serve without compensation.
23-13.3-5.
Reports. -- Three (3) years after the date a birth defects
surveillance and
information
system is implemented the department shall submit the first annual report to
the
governor,
the general assembly, the Children’s Cabinet and the Interagency Coordinating
Council.
The report shall describe the findings of the first year’s reporting and set
forth the
council’s
recommendations for the betterment of the birth defects surveillance and
information
system.
In addition, the council shall make recommendations to the appropriate state
agencies
whenever
it considers the recommendations to be necessary.
SECTION
2. This act shall take effect upon passage.
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LC00001/SUB
B
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