• According to Oregon statute, any scientific or medical genetic research conducted in such a manner that any DNA sample or genetic information used in the research is unidentified (ORS 192.531(1)).

• According to the Oregon Administrative Rules, scientific or medical research conducted in such a manner that the identity of an individual who has provided a sample, or the identity of an individual from whom genetic information has been obtained or the identity of the individual’s blood relatives, cannot be determined. Anonymous research does not include research conducted in such a manner that the identity of such an individual, or the identity of the individual’s blood relatives, can be determined by use of a code, encryption key or other means of linking the information to a specific individual (OAR 333-025-0100(1)).

Blanket Informed Consent

• 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.

Blood Relative

• a person who is:

  (a)

  Related by blood to an individual; and

  (b)

  A parent, sibling, son, daughter, grandparent, grandchild, aunt, uncle, first cousin, niece or nephew of the individual.

Coded

• Identifiable only through the use of a system of encryption that links a DNA sample or genetic information to an individual or the individual’s blood relative. A coded DNA sample or genetic information is supplied by a repository to an investigator with a system of encryption.

De-identified

• Lacking, or having had removed, the identifiers or system of encryption that would make it possible for a person to link a DNA sample or genetic information to an individual or the individual’s blood relative, and neither the investigator nor the repository can reconstruct the identity of the individual from whom the sample or information was obtained. Deidentified DNA samples and genetic information must meet the standards provided in 45 C.F.R. 164.502(d) and 164.514(a) to (c), as in effect on July 17, 2007.

Disclose

• To release, publish or otherwise make known to a third party a DNA sample or genetic information.

DNA Sample

• Any human biological specimen that is obtained or retained for the purpose of extracting and analyzing DNA to perform a genetic test. “DNA sample” includes DNA extracted from the specimen.

Genetic Characteristic

• Includes a gene, chromosome or alteration thereof that may be tested to determine the existence or risk of a disease, disorder, trait, propensity or syndrome, or to identify an individual or a blood relative. “Genetic characteristic” does not include family history or a genetically transmitted characteristic whose existence or identity is determined other than through a genetic test.

Genetic Information

• Information about an individual or the individual’s blood relatives obtained from a genetic test.

Genetic Research

• Research using DNA samples, genetic testing or genetic information.

Genetic test

• 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.

Identifiable

• Capable of being linked to the individual or a blood relative of the individual from whom the DNA sample or genetic information was obtained.

Identified

• Having an identifier that links, or that could readily allow the recipient to link, a DNA sample or genetic information directly to the individual or a blood relative of the individual from whom the sample or information was obtained.

Identifier

• Data elements that directly link a DNA sample or genetic information to the individual or a blood relative of the individual from whom the sample or information was obtained. Identifiers include, but are not limited to, names, telephone numbers, electronic mail addresses, Social Security numbers, driver license numbers and fingerprints.

Notification of Anonymous Genetic Research

• A written statement in plain language, either before or after the sample is obtained, that the sample may be used for anonymous research.

Retain genetic Information

• Making a record of the genetic information.

Specific Informed Consent

• The individual or the individual’s representative has consented to the use of that individual’s DNA sample or genetic information for genetic research or for a specified genetic research project (OAR 333-025-0100(21)).