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U.S. National Institutes of Health
Last Updated: 03/05/10

Appendix A

Summary of State Laws

This summary of state laws does not include full citations for statutes that prohibit discrimination in employment or insurance on the basis of genetic testing or genetic information. There are other comprehensive collections of state laws addressing genetic nondiscrimination in employment and insurance. Therefore, there are complete references only where the statute is relevant for the conduct of research using tissue specimens.

NEW JERSEY

Confidentiality of Health Information

Hospital patients have a right to privacy, and patients’ medical records must be kept confidential. [New Jersey Statutes Annotated 26:2H-12.8]

Authors’ note: Many states have enacted some form of a patients’ bill of rights (Connecticut, Delaware, Florida, Georgia, Hawaii, Illinois, Maryland, Massachusetts, Minnesota, Mississippi, Montana, Nevada, North Carolina, New Hampshire, New Jersey, North Dakota, Oregon, Rhode Island, Tennessee, Texas, Vermont) some of which require informed consent to participate in research or that consent be documented (Delaware, Hawaii, Maryland, Massachusetts, Minnesota, Montana, North Carolina). Of these, only New York explicitly excludes the research uses of tissue research from the restrictions of the statute.

Conditions Imposed on Genetic Testing/Use of Genetic information

The “Genetic Privacy Act” establishes rules for the collection, storage, and use of identifiable DNA samples and private genetic information obtained from those samples. The Act requires informed consent from an individual prior to obtaining genetic information. The Act includes provisions for notifying individuals that a genetic test will be requested or required, and a prohibition on disclosure without consent. [New Jersey Statutes Annotated 10:5-48]

New Jersey law prohibits discrimination in the provision of insurance on the basis of genetic information or genetic testing. [New Jersey Statutes Annotated 17B:30-12]

Permitted Releases of Health Information or Genetic Information for Research

The requirement to obtain informed consent when obtaining genetic information does not apply for anonymous research where the identity of the subject will not be released. [New Jersey Statutes Annotated 10:5-45]

Definition of Genetic Test/Genetic Information

"Genetic characteristic" means any inherited gene or chromosome, or alteration thereof, that is scientifically or medically believed to predispose an individual to a disease, disorder or syndrome, or to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome.

"Genetic information" means the information about genes, gene products or inherited characteristics that may derive from an individual or family member.

"Genetic test" means a test for determining the presence or absence of an inherited genetic characteristic in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to identify a predisposing genetic characteristic.

[New Jersey Statutes Annotated 10:5-5]

Genetic information means the information about genes, gene products or inherited characteristics that derive from an individual or family member.

Genetic test means a test for determining the presence or absence of an inherited genetic characteristic of an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes in order to identify a predisposing genetic characteristic.

[New Jersey Statutes Annotated 17B:30-12].