§ 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).
(P.L. 2003, ch. 116, § 1; P.L. 2003, ch. 183, § 1.)