§ 23-13.3-3 - Statewide birth defects surveillance and information system. - Rhode Island Statutes

SECTION 23-13.3-3

   § 23-13.3-3  Statewide birth defectssurveillance and information system. – (a) The director shall establish and implement not later than one year afterpassage of this act a statewide birth defects reporting, surveillance andinformation system for the collection of information concerning birth defectsof newborns and spontaneous fetal deaths. The director shall establish thetypes of birth defects to be reported, reporting requirements andconfidentiality standards.

   (b) The director shall require the reporting of birth defectsand the submission of any specified additional information on cases necessaryand appropriate for the recognition of birth defects and to conductepidemiological surveys of birth defects.

   (c) The birth defects surveillance and information systemshall maintain comprehensive records of all reports submitted pursuant to thissection. These reports shall be confidential in accordance with chapter 37.3 oftitle 5 and subject to the restrictions on release incorporated in thatchapter. Provided, however: (1) any such information shall be available onlyfor the purposes of this chapter; and (2) any data requested for demographic orepidemiological studies shall be provided in a format without individuallyidentifiable information.

   (d) The department shall maintain a public listing of anynondepartmental employees who are given access to identifiable information inthe surveillance and information system. The listing shall include: the name ofthe person authorizing access; the name, title and organizational affiliationof each person given access; the date of access; and the specific purpose forwhich the information was used.

   (e) Nothing in this section shall be construed to compel anyindividual to submit to medical or department examination or supervision.

   (f) The director shall make rules and regulations that arenecessary to implement the provision of this section pursuant to chapter 35 oftitle 42.

   (g) The department shall not require the reporting ofinformation or entering of information into the birth defects surveillance andinformation system regarding birth defects of a child whose parents or legalguardian objects.

   (h) Parents and/or guardians shall have the right to prohibitthe release of individually identifiable information on their children from thebirth defects surveillance and information system, and shall have the right toprohibit being contacted by the Birth Defects Surveillance Program.

   (i) The department shall provide timely notification toparents and/or guardians of their rights under subsections (g) and (h).