N.J. Stat. tit. 26, ch. 5B

in effect

N.J. Stat. § 26:5B-1 Short title

This act shall be known and may be cited as the "Hereditary Disorders Act." L.1981, c. 502, s. 1.

N.J. Stat. § 26:5B-2 Legislative findings and declarations

The Legislature finds and declares: that hereditary disorders such as Cooley's anemia, cystic fibrosis, sickle cell anemia, hemophilia, Huntington's Disease, galactosemia and phenylketonuria often present a costly and tragic hardship for citizens of this State; that early detection of the disorders can alleviate some potentially harmful and disabling conditions; that hereditary disorders vary in their severity, with some having little effect and others having significant negative effect upon the normal functioning of individuals; that hereditary disorders also vary in their treatability, with some being subject to total or partial alleviation through medical intervention and treatment and others, currently, not being subject to any more than minimal alleviation; that medical knowledge concerning early identification and treatment of certain hereditary disorders is rapidly expanding; and that it is the policy of this State that in order to insure that standards for detection and treatment comply with the most recent medical knowledge and that the public is kept informed about these standards and the availability of treatment, it is necessary to establish an hereditary disorders program. L.1981, c. 502, s. 2.

N.J. Stat. § 26:5B-3 Hereditary disorder defined

As used in this act "hereditary disorder" means any human ailment, disease or deformity resulting from a specific genetic condition and for which treatment is available, and includes Cooley's anemia, cystic fibrosis, sickle cell anemia, hemophilia, Huntington's Disease, and inborn errors of metabolism such as galactosemia and phenylketonuria. L.1981, c. 502, s. 3.

N.J. Stat. § 26:5B-4 Duties of department of health

The Department of Health, in consultation with appropriate professional advisory groups, shall: a. Establish guidelines for the early identification of persons born with hereditary disorders and standards for testing for hereditary disorders in newborn infants; b. Establish guidelines for the education and treatment of persons born with hereditary disorders; c. Establish procedures for referral of persons with hereditary disorders and their families to medical treatment and financial assistance; d. Institute and carry out an educational program among physicians, hospitals, public health departments and the public concerning hereditary disorders; e. Consult with the Commissioner of Insurance in identifying arbitrary and unreasonable discrimination against persons with hereditary disorders and their families in insurance coverages; f. Evaluate on a continuous basis the need for and efficacy of State programs for the treatment of persons with hereditary disorders; g. Promulgate all rules and regulations necessary to carry out the purposes of this act. L.1981, c. 502, s. 4.

N.J. Stat. § 26:5B-5 Findings, declarations relative to sickle cell anemia.

9. The Legislature finds and declares that: a. Sickle cell anemia is an inherited blood disorder characterized primarily by chronic anemia and periodic episodes of pain; b. The clinical course of sickle cell anemia does not follow a single pattern, for the symptoms can range from mild to very severe; c. Sickle cell anemia affects millions of people throughout the world but in this country affects approximately 72,000 people, according to the National Heart, Lung, and Blood Institute, most of whom are African-Americans and Hispanic-Americans of Caribbean ancestry; d. Approximately two million Americans, or one in 12 African-Americans, carry the sickle cell trait; and the disease occurs in approximately one in 500 African-Americans and one in every 1,000-1,400 Hispanic-Americans; e. All newborn infants born in New Jersey and in most other states are screened for sickle cell anemia; however, there is currently no known means of prevention or cure for the disease, although promising new methods of treatment have emerged from clinical studies in recent years, including drug therapy, bone marrow transplants from matched siblings, and umbilical cord blood transplants; and f. There is a widespread need for information among those populations who are at greatest risk for carrying the sickle cell trait about the genetic risk factors associated with sickle cell anemia and the symptoms and treatment of the disease. L.2011, c.210, s.9.

N.J. Stat. § 26:5B-6 Availability of information about sickle cell anemia.

10. a. The Department of Health, in consultation with the Medical Society of New Jersey and Rutgers, The State University, shall prepare, and make available on its Internet website, information in English and Spanish, which is designed to be easily understandable by the general public, about the genetic risk factors associated with, and the symptoms and treatment of, sickle cell anemia, in addition to any other information that the Commissioner of Health deems necessary for the purposes of this act. The department shall revise this information whenever new information about sickle cell anemia becomes available. b. The department shall prepare an informational booklet in English and Spanish that contains the information posted on its website pursuant to subsection a. of this section, as funds become available for that purpose. The department shall make a supply of booklets available to all licensed health care facilities engaged in the diagnosis or treatment of sickle cell anemia, as well as to health care professionals, community health centers, members of the public, and social services agencies upon their request. L.2011, c.210, s.10; amended 2012, c.17, s.341; 2012, c.45, s.118.

N.J. Stat. § 26:5B-7 Definitions relative to amyotrophic lateral sclerosis and motor neuron disease; reporting of data; patient and health care provider confidentiality; accessing the New Jersey State Health Assessment Data System.

1. a. As used in this section: “Amyotrophic lateral sclerosis” means a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. "Health care professional" means a person licensed to practice a health care profession pursuant to Title 45 of the Revised Statutes. "Motor neuron disease" means a group of progressive neurological conditions that destroy motor neurons, which are the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing, and include amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy’s disease, and post-polio syndrome. b. (1) Consistent with federal and State privacy laws, the Department of Health shall require health care professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis or motor neuron disease, to confidentially report to the department all known cases of amyotrophic lateral sclerosis and motor neuron disease in a manner to be specified by the department no later than six months following a patient’s amyotrophic lateral sclerosis or motor neuron disease diagnosis. (2) Any information reported to the department for display on the New Jersey State Health Assessment Data System pursuant to this subsection shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional. (3) The department may enter into agreements to provide the data reported to it pursuant to this subsection with the federal Centers for Disease Control and Prevention and any other successor agency, local health officers, or researchers of the study of amyotrophic lateral sclerosis or motor neuron disease for public health and research purposes. Any data provided to the federal Centers for Disease Control and Prevention and any other successor agency, local health officers, or researchers of the study of amyotrophic lateral sclerosis or motor neuron disease pursuant to this paragraph shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional. The department shall use the New Jersey Integrated Population Health Data Project (iPHD) protocols or a successor program to share data to researchers. c. The New Jersey State Health Assessment Data System shall record and compile information received pursuant to this section for research and statistical purposes only. d. Nothing in this act shall be construed to authorize the disclosure of any confidential or personal identifying information. e. No later than 12 months following the effective date of this act, the Commissioner of Health shall develop and make available on its Internet website written educational materials that provide information about the New Jersey State Health Assessment Data System, including information on how to access the datasets, statistics, and information regarding amyotrophic lateral sclerosis and motor neuron disease reported to the New Jersey State Health Assessment Data System pursuant to subsection b. of this section. L.2025, c.346.

Source: Open US Law by Vaquill AI (CC BY 4.0)URL: https://www.njleg.state.nj.us/legislative-activity/statutesFetched: 10/17/2026