Birth defect prevention and surveillance system – Wis. Stat. Ann. § 253.12

Birth Defect Prevention and Surveillance System

This law sets forth the rules for reporting of birth defects, the department of health's duties and powers with respect to maintaining a birth defect registry, and the confidentiality requirements.

The law requires that any pediatric specialty clinic where an infant is diagnosed with a birth defect or treatment is provided to an infant with a birth defect, and any physician who diagnoses or treats a birth defect in an infant is required to report the condition to the department of health, in the form prescribed by the department.  The law exempts such pediatric specialty clinics and physicians from reporting if they know that another person has already reported the birth defect.  The law prohibits the department from requiring that pediatric specialty clinics or physicians include the infant's name in the birth defect report without the written consent of the parent or guardian.

The law sets forth the following duties for the department of health:

• Establishing and maintaining an up-to-date birth defects registry, to facilitate identification of risk factors, investigation of the incidence and trends, development of primary preventive strategies, referrals for early intervention
• Specifying which birth defects require reporting
• Specifying the content and format of reporting
• Notifying those obligated to report about the obligation

The department is allowed to monitor the data in the reports for quality, and is required to delete the names of infants from their files within 10 years of receipt of the birth defect reports on the infants.

The law establishes a council on birth defect prevention and surveillance that is to meet 4 times a year to make recommendations to the department on the maintenance of the registry and coordination of early intervention programs.

The law prohibits the department of health from releasing any identifying information contained in the reports to anyone except the following:

• Parent or guardian of the infant
• Local health officer administering children with special health care needs program, upon written request and consent from parent/guardian
• Physician, hospital or pediatric specialty clinic for purpose of verification of information
• Representative of federal or state agency to perform a legally authorized function
• To a person proposing to conduct research, as long as

o   Researcher applies in writing for approval from department

o   Research is for the purpose of studying birth defects surveillance and prevention

o   Researcher agrees in writing that the ifnromation will only be used for approved research

o   Researcher agrees in writing that information will not be released to anyone not involved in the approved research

o   Researcher agrees in writing that the final product of research will not reveal identifying information

In cases where contact with subject or members of subject's family is required, department determines contact is necessary for research purposes, that research follows all regulations for human subject research, and written consent for contact has been obtained from parent/guardian