Children born with congenital anomaly, birth defect, birth injury or an intellectual disability; reports
Section 67E. (a) Within 30 days after the diagnosis in the commonwealth of a congenital anomaly, birth defect or birth injury which may lead to an incapacity or disability, the physician making the diagnosis shall report the anomaly, defect or injury to the department on a form to be furnished by the department. The commissioner shall require the submission of such information on reported cases up to the age of 3 years as he considers necessary and appropriate for the prevention and early detection of such anomalies, defects and injuries. Authorized officials or agents of the department may abstract and record information that is required for reporting from the medical records of children under the age of 3 years and their parents. Before abstracting or recording any additional information from an individual’s medical records, department officials shall obtain the approval of a duly constituted institutional review board that reviews and approves, and thereafter annually re-approves, a research protocol submitted to it by the department. The research protocol shall specify how such records shall be reviewed, how information from them shall be abstracted and reported, the exact information to be recorded, and how the information will be used, maintained and kept confidential. The department shall collect no more information than it considers necessary and appropriate in order to conduct epidemiological surveys and to develop appropriate preventative treatment and control measures.
(b) The contents of such reports, records and information shall be solely for the use of the department and such reports, records and information shall not be open to public inspection or constitute a public record. The commissioner may make such reports, records or information contained therein available to a researcher performing medical and scientific studies for the purpose of the reduction of morbidity and mortality in the commonwealth, so long as the commissioner and a duly constituted institutional review board first approves that study.
(c) Nothing in this section shall compel any individual to submit to medical or department examination, testing or supervision.
(d) The department shall make rules and regulations to implement this section.
(e) Within 30 days after the date of birth of any child with an intellectual disability, or within 30 days after any child has been diagnosed as having an intellectual disability, the physician making the diagnosis shall report, with the approval of the parents, the mental retardation to the department of developmental services for the purpose of having the department inform such parents of existing information and support services. The contents of this report shall be solely for the use as described in this subsection and shall not be open to public inspection or constitute a public record.