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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.

OREGON

Confidentiality of Health Information

  • Insurers, public health care providers and public health care facilities must use or disclose protected medical information according to individual authorization or in a manner consistent with individual authorization. [Oregon Revised Statutes Annotated 192.520]

Conditions Imposed on Genetic Testing/Use of Genetic information

According to Oregon law, 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.

A person may use an individual's DNA sample or genetic information for anonymous research only if the individual:

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

(B) Has granted consent for genetic research generally; or

(C) Was notified the sample or genetic information may be used for anonymous research and the individual did not, at the time of notification, request that the sample not be used for anonymous research.

(b) The Department of Human Services shall adopt rules to implement paragraph (a) of this subsection after considering similar federal regulations.

(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 181.085 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 multidisciplinary child abuse 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 Department of Human Services for identification of, or testing to benefit blood relatives of, deceased individuals; (d) Retention is permitted by rules of the Department of Human Services for newborn screening procedures; or (e) Retention is for anonymous research conducted after notification or with consent pursuant to subsection (2) of this section.

(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 181.085 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 multidisciplinary child abuse 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 conducted after notification or with consent pursuant to subsection (2) of this section.

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.

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.

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.

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.

This section applies only to a DNA sample or genetic information that is coded, identified or identifiable. 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.

[Oregon Revised Statutes Annotated 192.537]

Permitted Releases of Health Information or Genetic Information for Research

An individual’s DNA sample or genetic information may be used for anonymous research only if the individual was notified the sample or genetic information may be used for anonymous research and the individual did not, at the time of notification, request that the sample not be used for anonymous research. "Anonymous research" means scientific or medical genetic research conducted in such a manner that any DNA sample or genetic information used in the research is unidentified. "Blanket informed consent" means that the individual has consented to the use of the individual's DNA sample or health information for any future research, but has not been provided with a description of or consented to the use of the sample in genetic research or any specific genetic research project.

[West’s Oregon Revised Statutes Annotated 192.531]

Definition of Genetic Test/Genetic Information

“Genetic test” means a test for determining the presence or absence of genetic characteristics in an individual or the individual’s blood relatives, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose or determine a genetic characteristic. [West’s Oregon Revised Statutes Annotated 192.531 Definitions]