71st OREGON LEGISLATIVE ASSEMBLY--2001 Regular Session
 
NOTE:  Matter within  { +  braces and plus signs + } in an
amended section is new. Matter within  { -  braces and minus
signs - } is existing law to be omitted. New sections are within
 { +  braces and plus signs + } .
 
LC 1793
 
                         House Bill 2917
 
Sponsored by Representatives MERKLEY, SIMMONS; Representatives
  ACKERMAN, BACKLUND, BARNHART, BATES, BECK, BOWMAN, BROWN,
  BUTLER, CARLSON, DEVLIN, DOYLE, GARDNER, GARRARD, HANSEN, HASS,
  HILL, HOPSON, JENSON, KAFOURY, KNOPP, KRIEGER, KROPF, KRUMMEL,
  KRUSE, LEE, LEONARD, LOWE, MARCH, MONNES ANDERSON, MORGAN,
  MORRISETTE, NELSON, NOLAN, PATRIDGE, RINGO, ROSENBAUM,
  SCHRADER, SHETTERLY, G SMITH, P SMITH, T SMITH, STARR, TOMEI,
  VERGER, C WALKER, V WALKER, WILLIAMS, WILSON, WIRTH, WITT,
  ZAUNER, Senators ATKINSON, L BEYER, R BEYER, BROWN, BURDICK,
  CARTER, CASTILLO, CLARNO, CORCORAN, DECKERT, DUKES, DUNCAN,
  FERRIOLI, FISHER, GEORGE, GORDLY, HANNON, HARTUNG, MESSERLE,
  METSGER, MILLER, SHIELDS, STARR, TROW
 
 
                             SUMMARY
 
The following summary is not prepared by the sponsors of the
measure and is not a part of the body thereof subject to
consideration by the Legislative Assembly. It is an editor's
brief statement of the essential features of the measure as
introduced.
 
  Prohibits use of genetic information by insurer.
 
                        A BILL FOR AN ACT
Relating to insurance; creating new provisions; amending ORS
  659.700, 659.705, 659.710 and 659.715; and repealing ORS
  746.135.
Be It Enacted by the People of the State of Oregon:
  SECTION 1.  { + Section 2 of this 2001 Act is added to and made
a part of ORS chapter 746. + }
  SECTION 2.  { + (1) An insurer is prohibited from requesting,
obtaining or using genetic information about an applicant for
insurance in connection with an application for insurance.
  (2) An insurer may not ask an applicant for insurance to:
  (a) Take a genetic test in connection with the application;
  (b) Provide genetic information about the applicant that is
otherwise available; or
  (c) Provide genetic information about a blood relative of the
applicant.
  (3) As used in this section, 'genetic information' and '
genetic test' have the meanings given those terms in ORS
659.700. + }
  SECTION 3. 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 an individual who has provided a sample, or
the identity of 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) - }   { + (7) + } 'Person' has the meaning given in
ORS 433.045.
  SECTION 4. ORS 659.700, as amended by section 2, chapter 921,
Oregon Laws 1999, is amended to read:
  659.700. As used in ORS 659.700 to 659.720:
  (1) 'Anonymous research' means scientific or medical research
conducted in such a manner that the identity of a person who has
provided a sample, or the identity of a person from whom genetic
information has been obtained, cannot be determined.
  (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) - }   { + (7) + } 'Person' has the meaning given in
ORS 433.045.
  SECTION 5. ORS 659.705 is amended to read:
  659.705. (1) The Legislative Assembly finds that:
 
  (a) The DNA molecule contains information about an individual's
probable medical future. 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 the individual,
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 an 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 privacy and to
permit legitimate scientific and medical research.
  (2) The purposes of ORS 659.700 to 659.720   { - and
746.135 - }  and the provisions of ORS 659.036, 659.227 and
746.015 relating to genetic characteristics, information and
testing are as follows:
  (a) To define the rights of individuals whose genetic
information is collected, retained or disclosed.
  (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.
  SECTION 6. ORS 659.710 is amended to read:
  659.710. (1) No person shall 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 181.085 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 where the identity of the subject
will not be revealed;
  (c) As permitted by rules of the Health Division for
identification of deceased individuals;
  (d) As permitted by rules of the Health Division for newborn
screening procedures; or
  (e) As authorized by statute for the purpose of establishing
paternity.
  (2) 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. 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)   { - An insurance provider 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 rules adopted by the Department of Consumer and Business
Services. - }  Any other person 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 Health Division.
  (4) The Health Division 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.
  SECTION 7. ORS 659.715 is amended to read:
  659.715. (1) Subject to the provisions of ORS 659.036
 { - , - }   { + and + } 659.700 to 659.720   { - and 746.135 - }
, an individual's genetic information and DNA sample are the
property of the individual except when the information or sample
is used in anonymous research.
  (2) A person does not interfere with, infringe upon,
misappropriate or otherwise damage an individual's property by
obtaining, testing, retaining, disclosing or providing an
individual's genetic information or DNA sample solely for
anonymous research.
  (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 Health Division for
identification of, or testing to benefit blood relatives of,
deceased individuals;
  (d) Retention is permitted by rules of the Health Division for
newborn screening procedures; or
  (e) Retention is for anonymous research.
  (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.
  (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, unless
the genetic information has been made anonymous by destruction of
all information that could allow disclosure of the identity of
the individual who provided the sample.
  (8) The Health Division shall coordinate the implementation of
this section.
  (9) This section applies only to genetic information that can
be identified as belonging to an individual or family. 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.
  SECTION 8.  { + ORS 746.135 is repealed. + }
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