An Act To Enhance Newborn Blood Spot Screening To Conform to Federal Newborn Screening Standards
Sec. 1. 22 MRSA §42, sub-§5, as amended by PL 2007, c. 508, §1, is further amended to read:
The department's confidential records may not be open to public inspection, are not public records for purposes of Title 1, chapter 13, subchapter 1 and may not be examined in any judicial, executive, legislative or other proceeding as to the existence or content of any individual's records obtained by the department.
Exceptions to this subsection include release of medical and epidemiologic information in such a manner that an individual can not be identified; disclosures that are necessary to carry out the provisions of chapter 250; disclosures made upon written authorization by the subject of the record, except as otherwise provided in this section; and disclosures that are specifically provided for by statute or by departmental rule. The department may participate in a regional or national tracking system as provided in section sections 1533 and 8824 or both.
Nothing in this subsection precludes the department, during the data collection phase of an epidemiologic investigation, from refusing to allow the inspection or copying of any record or survey instrument, including any redacted record or survey instrument, containing information pertaining to an identifiable individual that has been collected in the course of that investigation. The department's refusal is not reviewable.
Sec. 2. 22 MRSA §1532, as amended by PL 2007, c. 450, Pt. A, §7, is further amended to read:
§ 1532. Detection of serious conditions
The department shall require hospitals, maternity homes birthing centers and other maternity birthing services to test newborn infants, or to cause them to be tested, by means of blood spot screening for the presence of treatable congenital, genetic or metabolic abnormalities conditions that may be expected to result in subsequent cognitive disabilities , serious illness or death. The department shall adopt rules to define this requirement and the approved testing methods, materials, procedure and testing sequences. Reports and records of those making these tests may be required to be submitted to the department in accordance with departmental rules. The department may, on request, offer consultation, training and evaluation services to those testing facilities. The department shall adopt rules according to which it shall in a timely fashion refer newborn infants with confirmed treatable congenital, genetic or metabolic abnormalities conditions to the Child Development Services System as defined in Title 20-A, section 7001, subsection 1-A. The department shall also adopt rules according to which it shall in a timely fashion refer a newborn infant to the Child Development Services System if at least 6 months have passed since an initial positive test result of a treatable congenital, genetic or metabolic abnormality condition without the specific nature of the metabolic abnormality's condition having been confirmed. The department and the Department of Education shall execute an interagency agreement to facilitate all referrals in this section. In accordance with the interagency agreement, the Department of Education shall offer a single point of contact for the Department of Health and Human Services to use in making referrals. Also in accordance with the interagency agreement, the Child Development Services System may make direct contact with the families who are referred. The referrals may take place electronically. For purposes of quality assurance and improvement, the Child Development Services System shall supply to the department aggregate data at least annually on the number of children referred to the Child Development Services System under this section who are found eligible for early intervention services and on the number of children found not eligible for early intervention services. In addition, the department shall supply data at least annually to the Child Development Services System on how many children in the metabolic abnormality detection newborn blood spot screening program as established by rule of the department under section 1533, subsection 2, paragraph G were screened and how many were found to have a metabolic disorder. The requirement in this section that a newborn infant be tested for the presence of treatable congenital, genetic or metabolic abnormalities conditions that may be expected to result in subsequent cognitive disability does not apply to a child if the parents of that child object on the grounds that the test conflicts with their religious tenets and practices.
Sec. 3. 22 MRSA §1533, sub-§2, as enacted by PL 1983, c. 848, §2, is amended to read:
summary
This bill amends the newborn screening program law to describe conditions for which screening is available and reliable and for which treatment improves outcomes. The bill also allows the program to align with national and regional efforts in screening, treatment and evaluation consistent with the federal Newborn Screening Saves Lives Act of 2007. The department's genetics program is responsible to coordinate matters pertaining to detection, prevention and treatment of genetic conditions and metabolic disorders. The collection and sharing of data with other states involved in the same newborn blood spot screening programs will allow the department to assess the comprehensive newborn screening system's strengths and weaknesses and will promote quality assurance, quality improvement and ongoing evaluation of the effectiveness of the newborn blood spot screening program as established by rule of the Department of Health and Human Services.