Chapter 921 Oregon Laws 1999

Session Law

 

AN ACT

 

SB 937

 

Relating to genetics; creating new provisions; amending ORS 659.700; and declaring an emergency.

 

Be It Enacted by the People of the State of Oregon:

 

      SECTION 1. ORS 659.700 is amended to read:

      659.700. As used in ORS 659.700 to 659.720:

      (1) "Anonymous research" means:

      (a) Scientific or medical research conducted in such a manner that the identity of [a person] an individual who has provided a sample, or the identity of [a person] an individual from whom genetic information has been obtained, cannot be determined; or

      (b) Scientific or medical research conducted in accordance with the Federal Policy for the Protection of Human Subjects with the approval of an institutional review board established in accordance with that policy.

      (2) "DNA" means deoxyribonucleic acid.

      (3) "DNA sample" means any human biological specimen from which DNA was extracted, or any human biological specimen that is obtained or retained for the purpose of extracting and analyzing DNA to determine a genetic characteristic. "DNA sample" includes DNA extracted from the specimen.

      (4) "Genetic characteristic" means any gene or chromosome, or alteration thereof, that is scientifically or medically believed to cause a disease, disorder or syndrome, or to be associated with statistically increased risk of development of a disease, disorder or syndrome.

      (5) "Genetic information" is the information about an individual or family obtained from:

      (a) A genetic test; or

      (b) An individual's DNA sample.

      (6) "Genetic test" means a test for determining the presence or absence of genetic characteristics in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose a genetic characteristic.

      (7) "Insurance provider" means an insurance company, health care service contractor, fraternal benefit organization, insurance agent, third party administrator, insurance support organization or other person subject to regulation by the Insurance Code.

      (8) "Person" has the meaning given in ORS 433.045.

      SECTION 2. ORS 659.700, as amended by section 1 of this 1999 Act, is amended to read:

      659.700. As used in ORS 659.700 to 659.720:

      (1) "Anonymous research" means[:]

      [(a)] scientific or medical research conducted in such a manner that the identity of [an individual] a person who has provided a sample, or the identity of [an individual] a person from whom genetic information has been obtained, cannot be determined[; or]

      [(b) Scientific or medical research conducted in accordance with the Federal Policy for the Protection of Human Subjects with the approval of an institutional review board established in accordance with that policy].

      (2) "DNA" means deoxyribonucleic acid.

      (3) "DNA sample" means any human biological specimen from which DNA was extracted, or any human biological specimen that is obtained or retained for the purpose of extracting and analyzing DNA to determine a genetic characteristic. "DNA sample" includes DNA extracted from the specimen.

      (4) "Genetic characteristic" means any gene or chromosome, or alteration thereof, that is scientifically or medically believed to cause a disease, disorder or syndrome, or to be associated with statistically increased risk of development of a disease, disorder or syndrome.

      (5) "Genetic information" is the information about an individual or family obtained from:

      (a) A genetic test; or

      (b) An individual's DNA sample.

      (6) "Genetic test" means a test for determining the presence or absence of genetic characteristics in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose a genetic characteristic.

      (7) "Insurance provider" means an insurance company, health care service contractor, fraternal benefit organization, insurance agent, third party administrator, insurance support organization or other person subject to regulation by the Insurance Code.

      (8) "Person" has the meaning given in ORS 433.045.

      SECTION 3. The amendments to ORS 659.700 by section 2 of this 1999 Act become operative on January 1, 2002.

      SECTION 4. (1) The Office for Oregon Health Plan Policy and Research shall establish a Genetic Research Advisory Committee. The committee shall study the use and disclosure of genetic information and shall develop a legal framework that defines the rights of individuals whose DNA samples and genetic information are collected, stored, analyzed and disclosed.

      (2) The Genetic Research Advisory Committee shall consist of representatives appointed by each of the following:

      (a) President of the Senate;

      (b) Speaker of the House of Representatives;

      (c) Oregon Health Sciences University;

      (d) Oregon Genetic Privacy Advisory Committee;

      (e) Oregon Medical Association;

      (f) Oregon Association of Hospitals and Health Systems;

      (g) Health Division;

      (h) Department of Consumer and Business Services;

      (i) Kaiser Permanente Center for Health Research;

      (j) Oregon Biosciences Association;

      (k) Pharmaceutical Research and Manufacturers of America; and

      (L) Health care consumers.

      (3) The Office for Oregon Health Plan Policy and Research shall provide staff for the Genetic Research Advisory Committee. The office may seek public and private funds to assist in the work of the committee.

      (4) The Genetic Research Advisory Committee shall report to the Seventy-first Legislative Assembly in the manner provided by ORS 192.245 on the results of its studies and shall make any recommendations for legislative changes deemed necessary for the implementation of the recommendations of the committee.

      SECTION 5. This 1999 Act being necessary for the immediate preservation of the public peace, health and safety, an emergency is declared to exist, and this 1999 Act takes effect on its passage.

 

Approved by the Governor August 2, 1999

 

Filed in the office of Secretary of State August 2, 1999

 

Effective date August 2, 1999

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