Title 192 · ORS Chapter 192

192.556. �� (20) �Obtain genetic information� means performing or getting the results of a genetic test. �� (21) �Person� has the meaning given in ORS 433.045. �� (22) �Research� means a s

Citation: ORS 192.556

Section: 192.556

192.556.

�� (20) �Obtain genetic information� means performing or getting the results of a genetic test.

�� (21) �Person� has the meaning given in ORS 433.045.

�� (22) �Research� means a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalized knowledge.

�� (23) �Retain a DNA sample� means the act of storing the DNA sample.

�� (24) �Retain genetic information� means making a record of the genetic information.

�� (25) �Unidentified� means deidentified or not identifiable. [Formerly 659.700; 2003 c.333 �1; 2005 c.678 �1; 2007 c.800 �6]

�� Note: 192.531 to 192.549 were enacted into law by the Legislative Assembly but were not added to or made a part of ORS chapter 192 or any series therein by legislative action. See Preface to Oregon Revised Statutes for further explanation.

�� 192.533 Legislative findings; purposes. (1) The Legislative Assembly finds that:

�� (a) The DNA molecule contains information about the probable medical future of an individual and the individual�s blood relatives. This information is written in a code that is rapidly being broken.

�� (b) Genetic information is uniquely private and personal information that generally should not be collected, retained or disclosed without the individual�s authorization.

�� (c) The improper collection, retention or disclosure of genetic information can lead to significant harm to an individual and the individual�s blood relatives, including stigmatization and discrimination in areas such as employment, education, health care and insurance.

�� (d) An analysis of an individual�s DNA provides information not only about the individual, but also about blood relatives of the individual, with the potential for impacting family privacy, including reproductive decisions.

�� (e) Current legal protections for medical information, tissue samples and DNA samples are inadequate to protect genetic privacy.

�� (f) Laws for the collection, storage and use of identifiable DNA samples and private genetic information obtained from those samples are needed both to protect individual and family privacy and to permit and encourage legitimate scientific and medical research.

�� (2) The purposes of the genetic privacy statutes are as follows:

�� (a) To define the rights of individuals whose genetic information is collected, retained or disclosed and the rights of the individuals� blood relatives.

�� (b) To define the circumstances under which an individual may be subjected to genetic testing.

�� (c) To define the circumstances under which an individual�s genetic information may be collected, retained or disclosed.

�� (d) To protect against discrimination by an insurer or employer based upon an individual�s genetic characteristics.

�� (e) To define the circumstances under which a DNA sample or genetic information may be used for research. [Formerly 659.705; 2003 c.333 �2]

�� Note: See note under 192.531.

�� 192.535 Informed consent for obtaining genetic information. (1) A person may not obtain genetic information from an individual, or from an individual�s DNA sample, without first obtaining informed consent of the individual or the individual�s representative, except:

�� (a) As authorized by ORS 181A.155 or comparable provisions of federal criminal law relating to the identification of persons, or for the purpose of establishing the identity of a person in the course of an investigation conducted by a law enforcement agency, a district attorney, a medical examiner or the Criminal Justice Division of the Department of Justice;

�� (b) For anonymous research or coded research conducted under conditions described in ORS 192.537 (2), after notification pursuant to ORS 192.538 or pursuant to ORS 192.547 (7)(b);

�� (c) As permitted by rules of the Oregon Health Authority for identification of deceased individuals;

�� (d) As permitted by rules of the Oregon Health Authority for newborn screening procedures;

�� (e) As authorized by statute for the purpose of establishing parentage; or

�� (f) For the purpose of furnishing genetic information relating to a decedent for medical diagnosis of blood relatives of the decedent.

�� (2) Except as provided in subsection (3) of this section, a physician licensed under ORS chapter 677 shall seek the informed consent of the individual or the individual�s representative for the purposes of subsection (1) of this section in the manner provided by ORS 677.097. Except as provided in subsection (3) of this section, any other licensed health care provider or facility must seek the informed consent of the individual or the individual�s representative for the purposes of subsection (1) of this section in a manner substantially similar to that provided by ORS 677.097 for physicians.

�� (3) A person conducting research shall seek the informed consent of the individual or the individual�s representative for the purposes of subsection (1) of this section in the manner provided by ORS 192.547.

�� (4) Except as provided in ORS 746.135 (1), any person not described in subsection (2) or (3) of this section must seek the informed consent of the individual or the individual�s representative for the purposes of subsection (1) of this section in the manner provided by rules adopted by the Oregon Health Authority.

�� (5) The Oregon Health Authority may not adopt rules under subsection (1)(d) of this section that would require the providing of a DNA sample for the purpose of obtaining complete genetic information used to screen all newborns. [Formerly 659.710; 2003 c.333 �3; 2005 c.678 �2; 2009 c.595 �168; 2017 c.651 �39]

�� Note: See note under 192.531.

�� 192.537 Individual�s rights in genetic information; retention of information; destruction of information. (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.

�� (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:

�� (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]

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

�� Sec. 10. 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]

�� Note: See note under 192.531.

�� 192.538 Notice by health care provider regarding anonymous or coded research. (1) A health care provider that is a covered entity as defined in ORS 192.556 (2)(c) and that obtains an individual�s biological specimen or clinical individually identifiable health information shall notify the individual that the biological specimen or clinical individually identifiable health information may be disclosed or retained by the provider for anonymous research or coded research.

�� (2) A health care provider that is not a covered entity as defined in ORS 192.556 (2)(c) and that obtains an individual�s biological specimen or clinical individually identifiable health information may notify the individual that the biological specimen or clinical individually identifiable health information may be disclosed or retained by the provider for anonymous research or coded research.

�� (3) A health care provider described in subsection (1) of this section shall provide a notice to the individual describing how the biological specimen or clinical individually identifiable health information may be used and allowing the individual to request that the specimen or information not be disclosed or retained for anonymous research or coded research. The notice must contain a place where the individual may mark the individual�s request that the specimen or information not be disclosed or retained for anonymous research or coded research before returning the notice to the health care provider.

�� (4) The notice described in subsection (3) of this section:

�� (a) Must be given no later than when the provider obtains an individual�s biological specimen or clinical individually identifiable health information; and

�� (b) May be given at the same time and in the same manner as the notice of privacy practices required under the federal Health Insurance Portability and Accountability Act privacy regulations, 45 C.F.R. parts 160 and 164. [2005 c.678 �5]

�� Note: See note under 192.531.

�� 192.539 Disclosure of genetic information; exceptions. (1) Regardless of the manner of receipt or the source of genetic information, including information received from an individual or a blood relative of the 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 the identity of a blood relative of the individual, or to disclose genetic information about the individual or a blood relative of the individual in a manner that permits identification of the individual, unless:

�� (a) Disclosure 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) Disclosure is required by specific court order entered pursuant to rules adopted by the Chief Justice of the Supreme Court for civil actions;

�� (c) Disclosure is authorized by statute for the purpose of establishing parentage;

�� (d) Disclosure is specifically authorized by the tested individual or the tested individual�s representative by signing a consent form prescribed by rules of the Oregon Health Authority;

�� (e) Disclosure is for the purpose of furnishing genetic information relating to a decedent for medical diagnosis of blood relatives of the decedent; or

�� (f) Disclosure is for the purpose of identifying bodies.

�� (2) The prohibitions of this section apply to any redisclosure by any person after another person has disclosed genetic information or the identity of an individual upon whom a genetic test has been performed, or has disclosed genetic information or the identity of a blood relative of the individual.

�� (3) A release or publication is not a disclosure if:

�� (a) It involves a good faith belief by the person who caused the release or publication that the person was not in violation of this section;

�� (b) It is not due to willful neglect;

�� (c) It is corrected in the manner described in ORS 192.541 (4);

�� (d) The correction with respect to genetic information is completed before the information is read or heard by a third party; and

�� (e) The correction with respect to DNA samples is completed before the sample is retained or genetically tested by a third party. [Formerly 659.720; 2005 c.562 �22; 2009 c.595 �170; 2017 c.651 �40; 2019 c.141 �11]

�� Note: See note under 192.531.

�� 192.540 Use of deceased individual�s DNA sample or genetic information for research. Notwithstanding ORS 192.535 and