You work at a hospital and you have been asked to give a presentation to the medical staff summarizing the key points of a pending bill in your state that would change the requirements for newborn screening. The bill is copied and pasted below. The proposed new language is underlined. The language of the current law that would be deleted if the bill is adopted is indicated by the strikethrough line.

1. Section 1 of P.L. 1234 is amended to read as follows:

1. [It is hereby declared to be the public policy of this State that in the interests of public health every effort should be made to detect in newborn infants, hypothyroidism, galactosemia, phenylketonuria, and other preventable biochemical disorders which may cause mental retardation or other permanent disabilities and to treat affected individuals.]

The Legislature finds and declares that:

a. Newborn screening is an essential public health activity that strives to screen every newborn infant for a variety of congenital disorders, which, if not detected and managed early, can result in significant morbidity, mortality, and disability. The State's newborn screening system must provide the infrastructure for universal access and rapid and effective follow-up;

b. Ongoing advances in technologies and treatment modalities make it possible to screen newborn infants for a wide array of disorders. It is imperative that the State adjust its newborn screening program [annually] to incorporate these disorders to ensure that the program remains at the forefront of these advances; and

c. It is the intent of this act to protect the health and quality of life of newborn infants born in this State by enhancing the capacity to screen for congenital disorders and by providing all newborn infants with screens for certain [core] conditions and with appropriate referrals and early medical intervention when warranted; and newborn data collection is standardized, and conditions detected by newborn screening are tracked and monitored. Further, information on newborn screening and conditions for which a newborn can be screened should be readily accessible, current, and understandable to both health care providers and parents or guardians.

2. The Commissioner of Health shall establish a Newborn Screening Advisory Review Committee to annually review the disorders included in the Newborn Screening program, screening technologies, treatment options, and educational and follow-up procedures. The committee shall include, but need not be limited to, medical, hospital, and public health professionals, scientific experts, and consumer representatives and advocates. The committee shall meet annually to review and revise the list of disorders recommended for inclusion in the Newborn Screening program. The committee shall allow for public input in the course of conducting its review and issue recommendations to the commissioner on the improvement of the Newborn Screening program.

3. The Newborn Screening program in the Department of Health shall screen all infants born in this State for based on [hypothyroidism, galactosemia and phenylketonuria] the list of disorders that is recommended by the Newborn Screening Advisory Review Committee and approved by the Commissioner of Health consistent with the Recommended Uniform Screening Panel of the United States Secretary of Health and Human Services.

Based on the recommendations of the Newborn Screening Advisory Review Committee, the commissioner may also require the screening of newborn infants for other [preventable biochemical] disorders if reliable and efficient screening techniques are available. If the commissioner determines that an additional test shall be required, the commissioner, at least 60 days prior to requiring the test [he], shall so advise the President of the Senate, and the Speaker of the General Assembly.

The commissioner shall provide a follow-up program on positive screen cases in order that measures may be taken to prevent death, or intellectual or other permanent disabilities. The program shall provide timely intervention and, as appropriate, referrals to specialist treatment centers for newborn infants [with confirmed] who screen positive [diagnoses of] for disorders pursuant to this section.

The commissioner shall collect screening information on newborn infants in a standardized manner and develop a system for quality assurance which includes the periodic assessment of indicators that are measurable, functional, and appropriate to the conditions for which newborn infants are screened pursuant to this section. The commissioner shall have the authority to use the information collected to [track and monitor] provide follow-up to newborn infants and children with [confirmed] screened positive diagnoses [until they reach 21 years of age, and] to [evaluate the long-term outcomes of treatment] provide appropriate referral. Information on newborn infants compiled pursuant to this section [may] shall be used by the department and agencies designated by the commissioner for the purposes of carrying out this act, but otherwise the information shall be confidential and not divulged or made public so as to disclose the identity of any person to which it relates, except as provided by law.

The department shall provide education or training on the Newborn Screening program to physicians, hospital staffs, [public health] nurses, and the public concerning [those biochemical disorders] newborn screening.

The provisions of this section shall not apply if the parents of a newborn infant object in writing to the screening on the grounds that it would conflict with their religious tenets or practices.

Please address the following questions

How does the bill change the current law?

What is the purpose of these changes?

Which disorders will be screened and how will the state determine which disorders shall be screened?

What role will health care providers play in the determination of which disorders will be screened?

What are the consent requirements, if any?

What information, if any, will have to be provided to parents about the newborn screening?

What types of services, if any, will be provided to parents when a screening test is positive?

What do you anticipate being the major concerns raised about the bill?

Answer rating: 100% (QA)

1 Changes to Current Law The bill amends Section 1 of PL 1234 to update the language regarding newborn screening policies It removes the specific mention of hypothyroidism galactosemia and phenylketon... View the full answer