(a) As used in this section:

(1) “Commissioner” means the Commissioner of Public Health, or the commissioner’s designee;

(2) “Department” means the Department of Public Health;

(3) “Licensed health care professional” means a physician licensed pursuant to chapter 370, a physician assistant licensed pursuant to chapter 370, an advanced practice registered nurse or a registered nurse licensed pursuant to chapter 378 or a nurse midwife licensed pursuant to chapter 377; and

(4) “Newborn screening system” means the department’s tracking system for the screening of newborns pursuant to section 19a-55.

(b) The department may, within available appropriations, establish a birth defects surveillance program. Such program shall monitor the frequency, distribution and types of birth defects occurring in the state.

(c) Each child that is born in the state shall have a birth defects screening completed by a licensed health care professional prior to discharge from the hospital. The administrative officer or other person in charge of each hospital shall enter the results of each birth defects screening into the birth defects registry located in the department’s newborn screening system in a form and manner prescribed by the commissioner.

(d) Any licensed health care professional who provides care or treatment to a child that is under the age of one and was born in the state and who observes or acquires knowledge that the child has a birth defect shall, not later than forty-eight hours after observing or acquiring knowledge of such defect, notify the department of such defect in a form and manner prescribed by the commissioner. Such notification shall contain information, including, but not limited to, the nature of the birth defect and such other information as may reasonably be required by the department. The department shall post the notification form on the department’s Internet web site and keep each notification made under this section on file for at least six years from the date of its receipt.

(e) The commissioner shall have access to identifying information in the hospital discharge records of newborn infants born in the state upon request. Such identifying information shall be used solely for purposes of the birth defects surveillance program. A hospital, as defined in section 19a-490, shall make available to the department upon request the medical records of a patient diagnosed with a birth defect or other adverse reproductive outcomes for purposes of research and verification of data.

(f) The commissioner shall use the information collected under this section and information available from other sources to conduct routine analyses to determine whether there were any preventable causes of the birth defects about which the department was notified under this section.

(g) All information, including, but not limited to, personally identifiable information collected from a health care professional or hospital under this section shall be confidential. Such personally identifiable information shall be used solely for purposes of the birth defects surveillance program. Access to such information shall be limited to the department and persons with a valid scientific interest and qualification as determined by the commissioner, provided the department and such persons are engaged in demographic, epidemiologic or other similar studies related to health and agree, in writing, to maintain the confidentiality of such information as prescribed in this section and section 19a-25.

(h) The commissioner shall maintain an accurate record of all persons who are given access to the information in the newborn screening system. The record shall include (1) the name, title and organizational affiliation of persons given access to the system, (2) dates of access, and (3) the specific purpose for which the information is used. The record shall be open to public inspection during the department’s normal operating hours.

(i) All research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the commissioner.

(j) The commissioner may publish statistical compilations relating to birth defects or other adverse reproductive outcomes that do not in any way identify individual cases or individual sources of information.

(1949 Rev., S. 3825; P.A. 77-614, S. 323, 610; P.A. 93-381, S. 9, 39; P.A. 95-257, S. 12, 21, 58; P.A. 99-102, S. 16; P.A. 17-146, S. 13.)

History: P.A. 77-614 replaced department of health with department of health services, effective January 1, 1979; Sec. 19-21 transferred to Sec. 19a-53 in 1983; P.A. 93-381 replaced department of health services with department of public health and addiction services, effective July 1, 1993; P.A. 95-257 replaced Commissioner and Department of Public Health and Addiction Services with Commissioner and Department of Public Health, effective July 1, 1995; P.A. 99-102 deleted obsolete reference to osteopathy and made technical changes; P.A. 17-146 deleted provision re mailing report to department within forty-eight hours of acquiring knowledge child has physical defect, added Subsec. (a) re definitions, added Subsec. (b) re establishment of birth defects surveillance program, added Subsec. (c) re birth defects screenings, added Subsec. (d) re notification to department of child having birth defect by licensed health care professionals, added Subsec. (e) re access to identifying information by the commissioner, added Subsec. (f) re routine analyses of information, added Subsec. (g) re confidentiality of information, added Subsec. (h) re maintenance of record of persons given access to newborn screening system, added Subsec. (i) re review and approval of research, and added Subsec. (j) re publication of statistical compilations.