birth defects

Birth defects data created pursuant to the Birth Defect Monitoring Program must be kept confidential.

Confidential birth defect data may be disclosed to researchers with valid scientific interest meeting review, protocol and confidentiality standards

The department shall maintain a record of all persons given access to confidential birth defects monitoring program information including: the name of the person authorizing access, the person given access, dates of access, and the specific purpose for which information will be used.

Before birth defects monitoring program information is disclosed to any other person, agency or organization, the requesting party must demonstrate to the department that the entity has established procedures and has the ability to maintain confidentiality.

The confidential information under the birth defects monitoring program shall not be available by subpoena. Confidential information may not be disclosed, discoverable, or compelled to be produced in any court proceeding nor is it admissible as evidence in any court proceeding.

An individual shall have access to birth defects monitoring program records pertaining to them, pursuant to the IPA, Civil Code 1798.

The director shall give health facilities 15 days notice to make available to authorized program staff, the medical records of children diagnosed with birth defects and the medical records of their mothers. The medical records of mothers having miscarriages or stillborns shall also be made available.

All information collected for birth defects monitoring program shall be confidential and used only for the purposes stated. Access to such confidential information shall be limited to authorized program staff and persons with valid scientific interest who agree in writing to maintain confidentiality

Any disclosure under this section shall be limited to the information necessary for the purpose stated in the disclosure request and shall only be made upon written agreement that information will be kept confidential, used for the stated purpose, and not further disclosed.

The department, health care providers, and local health departments shall maintain the confidentiality of patient information in a manner consistent with existing law. Information shall only be used for research to identify risk factors for children's and women's diseases, to develop and evaluate screening tests, to develop and evaluate prevention strategies, and to develop and evaluate treatment.