An Act To Enhance Newbo!D Blood Spot Screening To Conform to Federal Newborn Screening Standards
Maine Legislature, Session 124, LD 1616
Sponsors: JONES
Amends: 22 MRSA §42, 22 MRSA §1532, 22 MRSA §1533

Legislative Document 
No~ 1616 
H.P. 1144 
House of Representatives, December 23,2009 
An Act To Enhance Newbo!D Blood Spot Screening To Conform to 
Federal Newborn Screening Standards 
Submitted by the Department of Health and Human Services pursuant to Joint Rule 204. 
Received by the ,Clerk of the House on December 21,2009. RefelTed to the Committee on 
Health and Human Services pursuant to Joint Rule 308.2 and ord~red printed pursuant to Joint 
Rule 401. 
Presented by Representative JONES of Mount Vernon. 
Printed on r~cyclcd p;;Jpcr 
'IY/~ 111· 7l!ac~{ 
MILLICENT .M. MacFARLAND 
Clerk 
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Be it enacted. by the People ofthe State of Maine as follows: 
Sec. 1. 22 MRSA §42, sub-§5, as amended by PL 2007, c. 508, § I, is further 
amended to read: 
5. 
Confidentiality of records containing certain medical hiformation. 
. Department records that contain personally identifying medical information that are 
created or obtained in connection with the department's public health activities or 
programs are confidential. These records include, but are not limited to, information on 
genetic, communicable, occupational or environmental disease entities, and information 
gathered from public health nurse activities, or any program for which the department 
collects personally identifying medical information .. 
The department's confidential records may not be open to public inspection, are not 
public records for purposes of Title I, chapter 13, subchapter I 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. 
IS 
Exceptions to this subsection incl1\(' ~ 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. 
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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, Qx 
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 servjces 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 I-A. The department shall also adopt rules according to which it shall 
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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 cif the metabolic 
abnormality's conditiOli having been confirmed: The department and the Department of 
Education shall execute an interagency agreement to facilitate all referrals in this section. 
In ac_cordance 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 refet1'als. 
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: 
2. Responsibility for the program. The commissioner shall designate personnel 
within the Division department's division of Maternal and Child Health family health to: 
A. 
Coordinate matters pertaining to detection, prevention and treatment of genetic 
conditions and metabolic disorders; 
A-I. Establish, maintain and operate a tracking system' to asses's and coordinate 
treatment related to congenital, genetic and metabolic disorders; 
A-2. Evaluate the effectiveness of screening, counseling and health care services in 
reducing the morbidity and mortality caused by heritable disorders in newborns and 
children; 
A-3. 
Collect, analyze and make available to families data on certain heritable 
disorders; 
A-4. Ensure access to treatment and other services that will improve clinical and 
developmental outcomes. To accomplish this, the department is authorized to share 
data with other states' public health newborn blood spot screening programs; 
B. 
Cooperate with and stimulate public and private not~for-prcifit associations, 
agencies, corporations, institutions or other entities involved in developing and 
implementing eligible programs and activities designed to provide services for 
genetic conditions and metabolic disorders; 
1. 
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C; 
Administer any funds whleh that are appropriated for the services and expenses 
of a genetic screening, counseling and education program; 
D. 
Enter into" agreements and contracts for the delivery of genetic services; 
E. 
Establish, promote and maintain a public information program on genetic 
conditions and metabolic disorders and the availability of counseling and treatment 
services; 
F. 
Publish, from time to time, the results of any relevant research, investigation or . 
survey conducted on genetic conditions and metabolic disorders and, from time to 
time, collate those publications for distribution to scientific organizations and 
qualified scientists and physicians; and 
G. 
Promulgate regulations Adopt rules necessary to carry out the purposes of this 
section chapter. 
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. 
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