(1) Subject to the provisions of ORS § 192.531 to 192.549, 659A.303 and 746.135, an individual’s genetic information and DNA sample are private and must be protected, and an individual has a right to the protection of that privacy. Any person authorized by law or by an individual or an individual’s representative to obtain, retain or use an individual’s genetic information or any DNA sample must maintain the confidentiality of the information or sample and protect the information or sample from unauthorized disclosure or misuse.

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(2)(a) A person may use an individual’s DNA sample or genetic information that is derived from a biological specimen or clinical individually identifiable health information for anonymous research or coded research only if the individual:

(A) Has granted informed consent for the specific anonymous research or coded research project;

(B) Has granted consent for genetic research generally;

(C) Was notified in accordance with ORS § 192.538 that the individual’s biological specimen or clinical individually identifiable health information may be used for anonymous research or coded research and the individual did not, at the time of notification, request that the biological specimen or clinical individually identifiable health information not be used for anonymous research or coded research; or

(D) Was not notified, due to emergency circumstances, in accordance with ORS § 192.538 that the individual’s biological specimen or clinical individually identifiable health information may be used for anonymous research or coded research and the individual died before receiving the notice.

(b) Paragraph (a) of this subsection does not apply to biological specimens or clinical individually identifiable health information obtained before July 29, 2005, if an institutional review board operating under ORS § 192.547 (1)(b) meets the requirements described in ORS § 192.547 (7)(b).

(3) A person may not retain another individual’s genetic information or DNA sample without first obtaining authorization from the individual or the individual’s representative, unless:

(a) Retention is authorized by ORS § 181A.155 or comparable provisions of federal criminal law relating to identification of persons, or is necessary for the purpose of a criminal or death investigation, a criminal or juvenile proceeding, an inquest, or a child fatality review by a county child abuse multidisciplinary team;

(b) Retention is authorized by specific court order pursuant to rules adopted by the Chief Justice of the Supreme Court for civil actions;

(c) Retention is permitted by rules of the Oregon Health Authority for identification of, or testing to benefit blood relatives of, deceased individuals;

(d) Retention is permitted by rules of the authority for newborn screening procedures; or

(e) Retention is for anonymous research or coded research conducted after notification or with consent pursuant to subsection (2) of this section or ORS § 192.538.

(4) The DNA sample of an individual from which genetic information has been obtained shall be destroyed promptly upon the specific request of that individual or the individual’s representative, unless:

(a) Retention is authorized by ORS § 181A.155 or comparable provisions of federal criminal law relating to identification of persons, or is necessary for the purpose of a criminal or death investigation, a criminal or juvenile proceeding, an inquest, or a child fatality review by a county child abuse multidisciplinary team;

(b) Retention is authorized by specific court order pursuant to rules adopted by the Chief Justice of the Supreme Court for civil actions; or

(c) Retention is for anonymous research or coded research conducted after notification or with consent pursuant to subsection (2) of this section or ORS § 192.538.

(5) A DNA sample from an individual that is the subject of a research project, other than an anonymous research project, shall be destroyed promptly upon completion of the project or withdrawal of the individual from the project, whichever occurs first, unless the individual or the individual’s representative directs otherwise by informed consent.

(6) A DNA sample from an individual for insurance or employment purposes shall be destroyed promptly after the purpose for which the sample was obtained has been accomplished unless retention is authorized by specific court order pursuant to rules adopted by the Chief Justice of the Supreme Court for civil, criminal and juvenile proceedings.

(7) An individual or an individual’s representative, promptly upon request, may inspect, request correction of and obtain genetic information from the records of the individual.

(8) Subject to the provisions of ORS § 192.531 to 192.549, and to policies adopted by the person in possession of a DNA sample, an individual or the individual’s representative may request that the individual’s DNA sample be made available for additional genetic testing for medical diagnostic purposes. If the individual is deceased and has not designated a representative to act on behalf of the individual after death, a request under this subsection may be made by the closest surviving blood relative of the decedent or, if there is more than one surviving blood relative of the same degree of relationship to the decedent, by the majority of the surviving closest blood relatives of the decedent.

(9) The Oregon Health Authority shall coordinate the implementation of this section.

(10) Subsections (3) to (8) of this section apply only to a DNA sample or genetic information that is coded, identified or identifiable.

(11) This section does not apply to any law, contract or other arrangement that determines a person’s rights to compensation relating to substances or information derived from an individual’s DNA sample. [Formerly 659.715; 2003 c.333 § 4; 2005 c.562 § 21; 2005 c.678 § 3; 2009 c.595 § 169; 2019 c.141 § 10; 2021 c.97 § 17]

Section 10, chapter 333, Oregon Laws 2003, provides:

Notwithstanding ORS § 192.537 (2)(a)(C), a person may use an individual’s DNA sample or genetic information for anonymous research if the DNA sample or genetic information was obtained prior to the effective date of this 2003 Act [June 12, 2003] and the individual was not notified the sample or genetic information may be used for anonymous research. [2003 c.333 § 10]

See note under 192.531.