Chapter
183
2003
-- S 0105 SUBSTITUTE A AS AMENDED
AN ACT
RELATING TO HEALTH AND SAFETY
Introduced By: Senators Perry, Gibbs,
Paiva-Weed, Connors, and Roberts
Date Introduced: January 22, 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; and
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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LC00732/SUB A
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