| 53 | | - | An Act concerning genetic testing and amending P.L.1996, c.126. Be It Enacted by the Senate and General Assembly of the State of New Jersey: 1. Section 6 of P.L.1996, c.126 (C.10:5-45) is amended to read as follows: 6. [No] A person shall not obtain genetic information from an individual, or from an individual's DNA sample, without first obtaining informed consent from the individual or the individual's representative according to regulations promulgated by the Commissioner of Health and Senior Services, in consultation with the Attorney General and Commissioner of Banking and Insurance, pursuant to subsection b. of section 9 of P.L.1996, c.126 (C.10:5-48). a. The requirements of this section shall not apply to genetic information obtained: (1) By a State, county, municipal, or federal law enforcement agency for the purposes of establishing the identity of a person in the course of a criminal investigation or prosecution, provided a DNA sample from a victim of or witness to a crime shall only be used to establish the identity of a person who is the subject of the investigation or prosecution for which the sample was obtained; (2) To determine paternity in accordance with the provisions of section 11 of P.L.1983, c.17 (C.9:17-48); (3) Pursuant to the provisions of the "DNA Database and Databank Act of 1994," P.L.1994, c.136 (C.53:1-20.17 et seq.); (4) To determine the identity of deceased individuals; (5) For anonymous research where the identity of the subject will not be released; (6) [Pursuant to] 1(a)1 From a newborn [screening requirements established by State or federal law] for the purposes of detecting disorders or conditions for which newborn screening is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.) 1[, unless the use is authorized by: (a) an order of a court of competent jurisdiction]1; or (b) 1with1 the informed consent of the newborn's parent or guardian; 1[or]1 (7) As authorized by federal law for the identification of persons1; or (8) Pursuant to a validly executed warrant issued by a judge of the Superior Court or upon order of a court of competent jurisdiction1. b. In the case of a policy of life insurance or a disability income insurance contract, informed consent shall be obtained pursuant to the provisions of P.L.1985, c.179 (C.17:23A-1 et seq.). (cf: P.L.1996, c.126, s.6) 2. Section 8 of P.L.1996, c.126 (C.10:5-47) is amended to read as follows: 8. a. Regardless of the manner of receipt or the source of genetic information, including information received from an individual, a person may not disclose or be compelled, by subpoena or any other means, to disclose the identity of an individual upon whom a genetic test has been performed or to disclose genetic information about the individual in a manner that permits identification of the individual, unless: (1) Disclosure is necessary for the purposes of a criminal or death investigation or a criminal or juvenile proceeding, provided a DNA sample of a person who is the victim of or a witness to a crime shall only be used for the purposes of the investigation or proceeding for which the sample was obtained; (2) Disclosure is necessary to determine paternity in accordance with the provisions of section 11 of P.L.1983, c.17 (C.9:17-48); (3) Disclosure is authorized by order of a court of competent jurisdiction 1or pursuant to a validly executed warrant issued by a judge of the Superior Court1; (4) Disclosure is made pursuant to the provisions of the "DNA Database and Databank Act of 1994," P.L.1994, c.136 (C.53:1-20.17 et seq.); (5) Disclosure is authorized by the tested individual or the tested individual's representative by signing a consent which complies with the requirements of the Department of Health and Senior Services; (6) Disclosure is for the purpose of furnishing genetic information relating to a decedent for medical diagnosis of blood relatives of the decedent; (7) Disclosure is for the purpose of identifying bodies; (8) Disclosure is [pursuant to] for detecting disorders or conditions for which newborn screening [requirements established by State or federal law] is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.); (9) Disclosure is authorized by federal law for the identification of persons; or (10) Disclosure is by an insurer pursuant to the requirements of P.L.1985, c.179 (C.17:23A-1 et seq.). b. The provisions of this section apply to any subsequent disclosure by any person after another person has disclosed genetic information or the identity of an individual upon whom a genetic test has been performed. (cf: P.L.1996, c.126, s.8) 3. Section 9 of P.L.1996, c.126 (C.10:5-48) is amended to read as follows: 9. a. A person who requires or requests that genetic testing be done or receives records, results, or findings of genetic testing shall provide the person tested with notice that the test was performed and that the records, results, or findings were received unless otherwise directed by informed consent pursuant to section 6 of P.L.1996, c.126 (C.10:5-45). The notice shall state that the information may not be disclosed to any person without the written consent of the person tested, unless disclosure is made pursuant to one of the exceptions provided for in section 8 of P.L.1996, c.126 (C. 10:5-47). b. The Commissioner of Health and Senior Services, in consultation with the Attorney General and Commissioner of Banking and Insurance, shall promulgate regulations pursuant to the provisions of the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.) governing procedures for obtaining informed written consent pursuant to P.L.1996, c.126, except where the procedures for obtaining informed written consent already are governed by national standards for informed consent as designated by the Commissioner of Health and Senior Services by regulation, which may include, but need not be limited to, guidelines from the Office of Protection for Research Risk, the Food and Drug Administration, or other appropriate federal agencies. c. The provisions of this section shall not apply to a DNA sample taken from a newborn to detect disorders or conditions for which newborn screening [requirements established by State or federal law] is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.). (cf: P.L.1996, c.126, s.9) 4. This act shall take effect on the first day of the fourth month next following the date of enactment. |
|---|
| 47 | + | An Act concerning genetic testing and amending P.L.1996, c.126. Be It Enacted by the Senate and General Assembly of the State of New Jersey: 1. Section 6 of P.L. 1996, c.126 (C.10:5-45) is amended to read as follows: 6. [No] A person shall not obtain genetic information from an individual, or from an individual's DNA sample, without first obtaining informed consent from the individual or the individual's representative according to regulations promulgated by the Commissioner of Health and Senior Services, in consultation with the Attorney General and Commissioner of Banking and Insurance, pursuant to subsection b. of section 9 of P.L.1996, c.126 (C.10:5-48). a. The requirements of this section shall not apply to genetic information obtained: (1) By a State, county, municipal, or federal law enforcement agency for the purposes of establishing the identity of a person in the course of a criminal investigation or prosecution, provided a DNA sample from a victim of or witness to a crime shall only be used to establish the identity of a person who is the subject of the investigation or prosecution for which the sample was obtained; (2) To determine paternity in accordance with the provisions of section 11 of P.L.1983, c.17 (C.9:17-48); (3) Pursuant to the provisions of the "DNA Database and Databank Act of 1994," P.L.1994, c.136 (C.53:1-20.17 et seq.); (4) To determine the identity of deceased individuals; (5) For anonymous research where the identity of the subject will not be released; (6) [Pursuant to] From a newborn [screening requirements established by State or federal law] for the purposes of detecting disorders or conditions for which newborn screening is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.), unless the use is authorized by: (a) an order of a court of competent jurisdiction; or (b) the informed consent of the newborn's parent or guardian; or (7) As authorized by federal law for the identification of persons. b. In the case of a policy of life insurance or a disability income insurance contract, informed consent shall be obtained pursuant to the provisions of P.L.1985, c.179 (C.17:23A-1 et seq.). (cf: P.L.1996, c.126, s.6) 2. Section 8 of P.L.1996, c.126 (C.10:5-47) is amended to read as follows: 8. a. Regardless of the manner of receipt or the source of genetic information, including information received from an individual, a person may not disclose or be compelled, by subpoena or any other means, to disclose the identity of an individual upon whom a genetic test has been performed or to disclose genetic information about the individual in a manner that permits identification of the individual, unless: (1) Disclosure is necessary for the purposes of a criminal or death investigation or a criminal or juvenile proceeding, provided a DNA sample of a person who is the victim of or a witness to a crime shall only be used for the purposes of the investigation or proceeding for which the sample was obtained; (2) Disclosure is necessary to determine paternity in accordance with the provisions of section 11 of P.L.1983, c.17 (C.9:17-48); (3) Disclosure is authorized by order of a court of competent jurisdiction; (4) Disclosure is made pursuant to the provisions of the "DNA Database and Databank Act of 1994," P.L.1994, c.136 (C.53:1-20.17 et seq.); (5) Disclosure is authorized by the tested individual or the tested individual's representative by signing a consent which complies with the requirements of the Department of Health and Senior Services; (6) Disclosure is for the purpose of furnishing genetic information relating to a decedent for medical diagnosis of blood relatives of the decedent; (7) Disclosure is for the purpose of identifying bodies; (8) Disclosure is [pursuant to] for detecting disorders or conditions for which newborn screening [requirements established by State or federal law] is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.); (9) Disclosure is authorized by federal law for the identification of persons; or (10) Disclosure is by an insurer pursuant to the requirements of P.L.1985, c.179 (C.17:23A-1 et seq.). b. The provisions of this section apply to any subsequent disclosure by any person after another person has disclosed genetic information or the identity of an individual upon whom a genetic test has been performed. (cf: P.L.1996, c.126, s.8) 3. Section 9 of P.L.1996, c.126 (C.10:5-48) is amended to read as follows: 9. a. A person who requires or requests that genetic testing be done or receives records, results, or findings of genetic testing shall provide the person tested with notice that the test was performed and that the records, results, or findings were received unless otherwise directed by informed consent pursuant to section 6 of P.L.1996, c.126 (C.10:5-45). The notice shall state that the information may not be disclosed to any person without the written consent of the person tested, unless disclosure is made pursuant to one of the exceptions provided for in section 8 of P.L.1996, c.126 (C. 10:5-47). b. The Commissioner of Health and Senior Services, in consultation with the Attorney General and Commissioner of Banking and Insurance, shall promulgate regulations pursuant to the provisions of the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.) governing procedures for obtaining informed written consent pursuant to P.L.1996, c.126, except where the procedures for obtaining informed written consent already are governed by national standards for informed consent as designated by the Commissioner of Health and Senior Services by regulation, which may include, but need not be limited to, guidelines from the Office of Protection for Research Risk, the Food and Drug Administration, or other appropriate federal agencies. c. The provisions of this section shall not apply to a DNA sample taken from a newborn to detect disorders or conditions for which newborn screening [requirements established by State or federal law] is explicitly authorized pursuant to the Newborn Screening Program in the Department of Health, P.L.1977, c.321 (C.26:2-110 et seq.). (cf: P.L.1996, c.126, s.9) 4. This act shall take effect on the first day of the fourth month next following the date of enactment. STATEMENT This bill limits the purposes for which genetic testing may be conducted on DNA samples taken from newborns and crime victims. Current law generally requires the informed consent of a person, or person's representative, in order to obtain a person's genetic information. However, this informed consent requirement does not apply to the use of a person's DNA by a State, county, municipal or federal law enforcement agency for the purposes of establishing the identity of a person in the course of a criminal investigation or prosecution, or for the purposes of newborn screening. Recent reports indicate that DNA samples of newborns, crime victims, and witnesses have been used to convict a family member of the newborn, the crime victim or witness, or a member of the victim or witness' family. Under the bill, a DNA sample from a victim of or witness to a crime is only to be used to establish the identity of a person who is the subject of the criminal investigation or prosecution for which the sample was obtained. The provisions of the bill further provide that a DNA sample taken from a newborn may only be used for the purpose of detecting disorders or conditions for which newborn screening is explicitly authorized pursuant to the State's Newborn Screening Program in the Department of Health. |
|---|