(A) All birth defects information collected by the department in the birth defects program is confidential and must be used solely for the purposes provided in this chapter.

(B) The department shall maintain confidentiality in regard to:

(1) data ascertainment;

(2) data and record retention;

(3) epidemiological study and reporting;

(4) research uses;

(5) referral for services for children and families;

(6) identifying data obtained from health and medical records; and

(7) data obtained from any source for any other use.

(C) An entity required to provide information to the department pursuant to Section 44-44-80 is not subject to liability for providing access and information or use and disclosure of protected health information. This access and reporting may not be considered a waiver, breach, or violation of a confidential relationship.

(D) Any use and disclosure of birth defects information must be governed by applicable confidentiality procedures of the department, using written confidentiality agreements and applicable laws. Information that is disclosed must be used only for purposes approved by the department.

(E) The program shall keep an accurate record of all persons allowed access to birth defects information for research or other authorized purposes. Records are not required to be kept on information shared with providers or families pursuant to the referral for services procedures in Section 44-44-130 and on data provided pursuant to Section 44-44-110 or Section 44-44-120. Records of access must be retained for six years and open to public inspection. Persons allowed access to data must be required to sign and maintain confidentiality agreements.

(F) A person who violates any of the confidentiality provisions of this chapter or an agreement entered into pursuant to this chapter is guilty of a misdemeanor and, upon conviction, must be fined not more than one thousand dollars or imprisoned not more than one hundred eighty days.

(G) Nothing in this section prohibits publication of reports and statistical compilations without identifying information.

(H) A child's parent or legal guardian who wants to review information concerning their child from the birth defects information system may request access to their child's information from the department. The department shall disclose and discuss the database information and the nature of all uses of this information with the parent. A parent may request in writing, on a form provided by the department, removal of this information from the system and the child's data must be deleted. To the extent that an individual child's information may have been included in aggregate releases, that information must not be deleted.

HISTORY: 2004 Act No. 281, Section 1, eff May 11, 2004.