§ 991. Establishment of Birth Information Network

(a) The Commissioner of Health shall establish a statewide birth information network designed to identify newborns who have specified health conditions which may respond to early intervention and treatment by the health care system.

(b) The Department of Health is authorized to collect information for the Birth Information Network for the purpose of preventing and controlling disease, injury, and disability. The Commissioner, in collaboration with appropriate partners, shall coordinate existing data systems and records to enhance the Network's comprehensiveness and effectiveness, including:

(1) vital records (birth, death, and fetal death certificates);

(2) the children with special health needs database;

(3) newborn metabolic screening;

(4) a voluntary developmental screening test;

(5) universal newborn hearing screening;

(6) the Hearing Outreach Program;

(7) the cancer registry;

(8) the lead screening registry;

(9) the immunization registry;

(10) the special supplemental nutrition program for women, infants, and children;

(11) the Medicaid claims database;

(12) the hospital discharge data system;

(13) health records, including discharge summaries, disease indexes, nursery logs, pediatric logs, and neonatal intensive care unit logs, from hospitals, outpatient specialty clinics, genetics clinics, and cytogenetics laboratories; and

(14) the Vermont Health Care Claims Uniform Reporting and Evaluation System.

(c) [Repealed.]

(d) The Network shall provide information on public health activities, such as surveillance, assessment, and planning for interventions to improve the health and quality of life for Vermont's infants and children and their families. This information shall be used for improving health care delivery systems and outreach and referral services for families with children with special health needs and for determining measures that can be taken to prevent further medical conditions.

(e) The Network shall be designed to follow infants and children up to one year of age with the 40 medical conditions listed in the matrix developed by the Birth Information Council which have been selected as identifiable via existing Vermont data systems and are considered to be representative of the most significant health conditions of newborns in Vermont, including conditions relating to upper and lower limbs. The Department of Health is authorized to amend the list of medical conditions through rulemaking pursuant to 3 V.S.A. chapter 25 to meet the objectives of this section.

(f) The Network's data system shall be designed to coordinate with the data systems of other states so that data on out-of-state births to Vermont residents will be captured for vital records, case ascertainment, and follow-up services. The Commissioner of Health is authorized to enter into interstate agreements containing the necessary conditions for information transmission.

(g) The Commissioner of Health shall compile information every two years to document possible links between environmental and chemical exposure with the special health conditions of Vermont's infants and children.

(h) The Department of Health shall develop a form that contains a description of the Birth Information Network and the purpose of the Network. The form shall include a statement that the parent or guardian of a child may contact the Department of Health and have his or her child's personally identifying information removed from the Network, using a process developed by the Advisory Committee. (Added 2003, No. 32, § 2; amended 2011, No. 35, § 3, eff. May 18, 2011; 2013, No. 131 (Adj. Sess.), § 119; 2015, No. 23, § 152; 2015, No. 152 (Adj. Sess.), § 13; 2017, No. 46, § 37, eff. July 1, 2019.)