§ 23-13-14 — § 23-13-14. Newborn screening program.

§ 23-13-14. Newborn screening program.

(a) The physician, midwife, nurse practitioner, or physician assistant attending a newborn child shall cause that child to be subject to newborn screening tests for metabolic, endocrine, and hemoglobinopathy disorders, and other conditions for which there is a medical benefit to the early detection and treatment of the disorder, and an assessment for developmental risk. The department of health shall make rules and regulations pertaining to screenings, diagnostic, and treatment services as accepted medical practice shall indicate. The rules and regulations shall include, at a minimum, newborn screening tests for all disorders and conditions for which there is a medical benefit to the early detection and treatment of the disorder or condition listed in the current version of the federal Recommended Uniform Screening Panel (RUSP) issued by the Secretary of the U.S. Department of Health and Human Services, and shall include newborn screening tests for all new disorders or conditions for which there is a medical benefit to the early detection and treatment of the disorder or condition added to the federal RUSP within two (2) years after the disorder or condition is added; provided, if the director of health determines in writing that it is not practicable to include a new disorder or condition within two (2) years, the time period may be extended for the shortest amount of time necessary, as determined by the director. The provisions of this section shall not apply if the parents of the child object to the tests on the grounds that those tests conflict with their religious tenets and practices.

(b) In addition, the department of health is authorized to establish by rule and regulation a reasonable fee structure for the newborn screening and disease control program, which includes but is not limited to, screening, diagnostic, and treatment services. The program shall be a covered benefit and be reimbursable by all health insurers, as defined in § 27-38.2-2, providing health insurance coverage in Rhode Island except for supplemental policies that only provide coverage for specific diseases, hospital indemnity Medicare supplements, or other supplemental policies. The department of human services shall pay for the program where the patient is eligible for medical assistance under the provisions of chapter 8 of title 40. The charges for the program shall be borne by the hospitals or other healthcare facilities where births occur in the absence of a third-party payor. Nothing in this section shall preclude the hospital or healthcare facility from billing the patient directly. The department of health is authorized to promulgate, by rule and regulation, requirements for the storage, access, and use of residual newborn screening specimens and classify data as protected health information. All personally identifiable information including records, correspondence, and documents specific to individual newborns and newborn screening specimens shall be used solely for purposes of the newborn screening program, such as medical intervention and counseling. Access to de-identified information shall be limited to the department and persons with a valid scientific interest and qualification as determined by the department, 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 the federal Health Insurance Portability and Accountability Act of 1996 and chapter 37.3 of title 5 ("Confidentiality of Health Care Information Actâ€�). Newborn screening specimens and newborn screening program information, records, reports, statements, notes, memoranda, or other data shall not be subjected to subpoena or discovery, nor shall it be admissible as evidence in any action of any kind in any court or before any other tribunal, board, agency, or person.

(c) There is created within the general fund a restricted receipt account to be known as the "newborn screening accountâ€� to implement the provisions of § 23-13-13 and this section. All funds received pursuant to § 23-13-13 and this section shall be deposited in the account. Funding dedicated exclusively to implement the provisions of § 23-13-13 and this section and received by the department of health from sources other than those identified in § 23-13-13 and this section may also be deposited in the newborn screening account. The general treasurer is authorized and directed to draw the general treasurer's orders on the account upon receipt of properly authenticated vouchers from the department of health.

Legislative History

P.L. 1987, ch. 276, § 2; P.L. 1988, ch. 285, § 1; P.L. 1995, ch. 110, § 1; P.L. 1995, ch. 370, art. 40, § 61; P.L. 2001, ch. 63, § 1; P.L. 2001, ch. 213, § 1; P.L. 2004, ch. 6, § 11; P.L. 2008, ch. 100, art. 28, § 4; P.L. 2011, ch. 211, § 1; P.L. 2011, ch. 247, § 1; P.L. 2021, ch. 359, § 1, effective January 1, 2022; P.L. 2021, ch. 360, § 1, effective January 1, 2022; P.L. 2025, ch. 137, § 1, effective June 24, 2025; P.L. 2025, ch. 145, § 1, effective June 24, 2025.