SENATE, No. 887

STATE OF NEW JERSEY

221st LEGISLATURE

PRE-FILED FOR INTRODUCTION IN THE 2024 SESSION

Sponsored by:

Senator  ANTHONY M. BUCCO

District 25 (Morris and Passaic)

SYNOPSIS

     Prohibits reporting medical information of children without consent of parent or legal guardian.

CURRENT VERSION OF TEXT

     Introduced Pending Technical Review by Legislative Counsel.

An Act concerning the medical information of children and amending and supplementing various parts of Title 26 of the Revised Statutes.

     Be It Enacted by the Senate and General Assembly of the State of New Jersey:

     1. (New section) a.  As used in this section, "health care provider" means a health care facility licensed pursuant to P.L.1971, c.136 (C.26:2H-1 et seq.) or a health care professional whose practice is regulated pursuant to Title 45 of the Revised Statutes.

     b.    Notwithstanding the provision of any law, rule, order, regulation, or statute to the contrary, no information of a child shall be reported by a health care provider to, or otherwise shared with, the Department of Health, or any other local or State governmental employee or entity, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

     c.     The provisions of this section shall not prohibit reporting or sharing a child's information if a health care provider has reasonable cause to believe that the child has been subjected to child abuse, including sexual abuse.

     2.  Section 6 of P.L.2001, c.373 (C.26:2-103.6) is amended to read as follows: 

     6. a. The commissioner shall establish a central registry of newborns identified as having or being at risk of developing a hearing loss.  The information in the central registry shall be used for the purposes of compiling statistical information and providing follow-up counseling, intervention and educational services to the parents of the newborns listed in the registry.

     b.    A hospital, birthing center or health care professional who performs testing required by this act shall report the results of such testing when a hearing loss is indicated to the department in a manner and on forms prescribed by the commissioner.

     c.     No information shall be reported to, or otherwise shared with, the department pursuant to this section, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

(cf: P.L.2001, c.373, s.6)

     3.  Section 4 of P.L.1995, c.328 (C.26:2-137.5) is amended to read as follows:

     4. a.  All lead screening blood samples collected by a physician, registered professional nurse or a health care facility pursuant to this act shall be sent to a laboratory licensed by the Department of Health, pursuant to the "New Jersey Clinical Laboratory Improvement Act," P.L.1975, c.166 (C.45:9-42.26 et seq.), for analysis of blood lead levels.

     b.    A laboratory which performs a lead screening test pursuant to this act shall report the test results to the department, the local health department in the municipality in which the child who is the subject of the test resides, and the physician, registered professional nurse or health care facility, agency or program that submitted the specimen, within five business days of obtaining the test result.

     c.     No information shall be reported to, or otherwise shared with, the Department of Health pursuant to this section, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

(cf: P.L.1995, c.328, s.4)

     4. Section 2 of P.L.2007, c.170 (C.26:2-186) is amended to read as follows: 

     2. a. A physician, psychologist, and any other health care professional licensed pursuant to Title 45 of the Revised Statutes who is qualified by training to make the diagnosis and who then makes the diagnosis that a child has an autism spectrum disorder shall report this diagnosis to the Department of Health in a form and manner prescribed by the Commissioner of Health.

     b.    The report shall be in writing and shall include the name and address of the person submitting the report, the name, age, place of birth, and address of the child diagnosed as having an autism spectrum disorder, and other pertinent information as may be required by the commissioner [; except that, if the child's parent or guardian objects to the reporting of the child's diagnosis for any reason, the report shall not include any information that could be used to identify the child].

     c.     The commissioner shall specify procedures for the health care professional to inform the child's parent or guardian of the requirements of subsections a. and b. of this section and the purpose served by including this information in the registry established pursuant to section 3 of P.L.2007, c.170 (C.26:2-187) [, as well as the parent's or guardian's right to refuse to permit the reporting of any information that could be used to identify the child].

     d.    No information shall be reported to, or otherwise shared with, the Department of Health pursuant to this section, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

(cf: P.L.2012, c.17, s.139)

     5. Section 4 of P.L.2013, c.143 (C.26:2H-144) is amended to read as follows: 

     4. a. A health care professional who makes the diagnosis of a sudden cardiac event in a child, or who makes the actual determination and pronouncement of death for a child, as applicable, shall report the sudden cardiac event to the department on a form and in a manner prescribed by the commissioner.

     b.    The report shall be in writing and shall include the name and address of the health care professional submitting the report, the name, age, and address of the child, and other pertinent information as may be required by the commissioner [; except that, if the child's parent or guardian objects to the reporting of the child's condition for any reason, the report shall not include any information that could be used to identify the child].

     c.     The commissioner shall specify procedures for the health care professional to inform the child's parent or guardian of the requirements of subsections a. and b. of this section and the purpose served by including this information in the registry [, as well as the parent's or guardian's right to refuse to permit the reporting of any information that could be used to identify the child].

     d. No information shall be reported to, or otherwise shared with, the Department of Health pursuant to this section, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

(cf: P.L.2013, c.143, s.4)

     6. Section 4 of P.L.2004, c.138 (C.26:4-134) is amended to read as follows: 

     4. a. There is established a Statewide automated and electronic immunization registry, to be designated as the New Jersey Immunization Information System, in the Department of Health.  The registry shall be designed to serve as a single repository of immunization records to aid, coordinate, and help promote effective and cost-efficient disease screening, prevention, and control efforts in the State.

     b.    A newborn infant in New Jersey, who is born on or after January 1, 1998, shall be enrolled in the registry [immediately following birth unless the parent or legal guardian of the infant provides a written request to not participate in the registry] only if the express, informed, and written consent to enrollment in the registry is first obtained from the child's parent or legal guardian. 

     A child born prior to January 1, 1998 may be enrolled in the registry at the parent's or legal guardian's written request.

     c.     Access to the information in the registry shall be limited to:  health care providers, schools, colleges, licensed child care centers, and public agencies, and private organizations as determined by regulation of the commissioner.  A registrant, or the registrant's parent or legal guardian if the registrant is a minor, shall have access to the registrant's immunization and other preventive health screening information in the registry.

     d.    The information contained in the registry shall be used for the following purposes:

     (1)   to help ensure that registrants receive all recommended immunizations in a timely manner by providing access to the registrants' immunization records;

     (2)   to help improve immunization rates by providing notice to registrants of overdue or upcoming immunizations; and

     (3)   to help control communicable diseases by assisting in the identification of persons who require immediate immunization in the event of a vaccine-preventable disease outbreak.

     e.     The authentic immunization and other preventive health screening record of a child, which shall consist of a paper or electronic copy of the registry entry that is a true and accurate representation of the information contained therein, obtained from the registry shall be accepted as a valid immunization and preventive health screening record of the registrant for the purpose of meeting immunization and preventive health screening documentation requirements for admission to a school, college, or licensed child care center.

     f.     A health care provider shall not discriminate in any way against a person solely because the person elects not to participate in the registry.

     g.    An authorized user granted access as provided in subsection c. of this section shall only access information in the registry on a specific patient or client who is presently receiving services, is under the user's care or is within the applicable governmental health authority's jurisdiction.

     h.    An agency, organization, or other entity authorized to access information in the registry shall not use any report made by a health care provider pursuant to this act in any punitive manner against the provider.

     i.     The commissioner, in consultation with the Public Health Council, shall adopt rules and regulations, pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), to effectuate the purposes of this act, including, but not limited to:

     (1)   the establishment and maintenance of the registry;

     (2)   the methods for submitting, and the content of, reports of immunizations to the registry, for which purpose the commissioner shall provide, to the maximum extent practicable, for reporting options to facilitate compliance with the requirements of subsection b. of this section;

     (3)   procedures for the birth hospital of a newborn infant or health care provider, as applicable, to inform the parent or legal guardian of a newborn infant or minor of the purpose of the registry and its potential uses by parties having authorized access to registry information, and the content of that information;

     (4)   procedures for a registrant, or the registrant's parent or legal guardian if the registrant is a minor, to review and correct information contained in the registry;

     (5)   procedures for the parent or legal guardian of a newborn infant or minor, or a person over 18 years of age, to request [to not participate in the registry at any time and] to remove or inactivate information from the registry;

     (6)   limits on, and methods of, access to the registry by those authorized pursuant to subsection c. of this section;

     (7)   procedures for health insurers to obtain immunization information from the registry concerning only their covered persons, as well as summary statistics, which information or statistics shall not be used or disclosed for any other purpose than to:

     (a)   improve patient care;

     (b)   provide quality assurance to employers purchasing group coverage and to health care providers;

     (c)   improve outreach and education efforts with respect to their covered persons and health care providers; and

     (d)   monitor and improve quality of care standards as developed by professional organizations, accreditation agencies and government agencies in collaboration with the department; and

     (8)   procedures for the department to disseminate statistical information and supporting commentary.

(cf: P.L.2012, c.17, s.340)

     7. Section 3 of P.L.1983, c.291 (C.26:8-40.22) is amended to read as follows: 

     3. a. The Commissioner of Health, in consultation with the Public Health Council, shall require the confidential reporting to the Department of Health of all cases where an infant is diagnosed with severe hyperbilirubinemia, and where a pregnancy results in a naturally aborted fetus or infant affected by a birth defect, and an electively aborted fetus that exhibits or is known to have a birth defect after 15 weeks of gestation.  The reporting requirement shall apply to all infants from birth through five years of age.

     b.    The Commissioner of Health shall determine the health care providers and facilities which shall be required to report all birth defects and all cases of severe hyperbilirubinemia, the types of conditions or defects that shall be reported, the type of information that shall be contained in the confidential report and the method for making the report.  In reports concerning all fetuses with anomalies, the name of the mother shall not be submitted.

     c. No information shall be reported to, or otherwise shared with, the Department of Health pursuant to this section, without first obtaining the express, informed, and written consent of the child's parent or legal guardian. 

(cf: P.L.2012, c.17, s.352)

     8. This act shall take effect immediately.

STATEMENT

     This bill prohibits reporting medical information of children without the consent of a parent or legal guardian.

     The bill supplements Title 26 of the Revised Statutes to provide that no information of a child is to be reported by a health care provider to, or otherwise shared with, the Department of Health, or any other local or State governmental employee or entity, without first obtaining the express, informed, and written consent of the child's parent or legal guardian.  However, the bill's provisions do not prohibit reporting or sharing a child's information if a health care provider has reasonable cause to believe that a child has been subjected to child abuse, including sexual abuse.

     Further, the bill amends various statutes within Title 26 of the Revised Statues regarding registries for autism, lead screening, birth defects, hearing loss, severe neonatal jaundice, sudden cardiac events, and vaccines, to provide that no information is to be reported to the Department of Health without first obtaining the express, informed, and written consent of the child's parent or legal guardian.