Chapter 116

Chapter 116

2003 -- H 5389 SUBSTITUTE B

Enacted 07/07/03


A N  A C T



     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


     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


     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


     (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


     (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.



LC00001/SUB B