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 539
A-Engrossed
Senate Bill 114
Ordered by the Senate May 18
Including Senate Amendments dated May 18
Printed pursuant to Senate Interim Rule 213.28 by order of the
President of the Senate in conformance with presession filing
rules, indicating neither advocacy nor opposition on the part
of the President (at the request of Joint Interim Judiciary
Committee for Senator Peter Courtney and Genetic Research
Advisory Committee)
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.
Imposes civil penalties for violations of genetic privacy
statutes. Creates crime of unlawfully obtaining, retaining or
disclosing genetic information. Punishes by maximum of one year's
imprisonment, $5,000 fine, or both. Establishes research
procedures. Creates Advisory Committee on Genetic Privacy and
Research. Extends protections to blood relatives of individuals
from whom genetic information was obtained. { + Specifies that
genetic information may be used for anonymous research only if
individual was notified sample might be so used and did not
object. + }
Declares emergency, effective on passage.
A BILL FOR AN ACT
Relating to genetic privacy; creating new provisions; amending
ORS 659.036, 659.121, 659.700, 659.705, 659.710, 659.715,
659.720 and 746.135; and declaring an emergency.
Be It Enacted by the People of the State of Oregon:
SECTION 1. { + Sections 2 to 4 and 6 to 8 of this 2001 Act are
added to and made a part of ORS 659.700 to 659.720. + }
SECTION 2. { + (1) An individual or an individual's blood
relative, representative or estate may bring a civil action
against any person who violates ORS 659.710, 659.715 or 659.720
or section 6 of this 2001 Act.
(2) For a violation of ORS 659.715 or section 6 of this 2001
Act, the court shall award the greater of actual damages or:
(a) $100, for an inadvertent violation that does not arise out
of the negligence of the defendant;
(b) $500, for a negligent violation;
(c) $10,000, for a knowing or reckless violation;
(d) $15,000, for a knowing violation based on a fraudulent
misrepresentation; or
(e) $25,000, for a knowing violation committed with intent to
sell, transfer or use for commercial advantage, personal gain or
malicious harm.
(3) For a violation of ORS 659.710 or 659.720, the court shall
award the greater of actual damages or:
(a) $1,000, for an inadvertent violation that does not arise
out of the negligence of the defendant;
(b) $5,000, for a negligent violation;
(c) $100,000, for a knowing or reckless violation;
(d) $150,000, for a knowing violation based on a fraudulent
misrepresentation; or
(e) $250,000, for a knowing violation committed with intent to
sell, transfer or use for commercial advantage, personal gain or
malicious harm.
(4) It is an affirmative defense to an action described in
subsection (2)(a) or (b) or (3)(a) or (b) of this section that
the defendant corrected the violation through destruction of
illegally retained or obtained samples or information, or took
other action to correct the violation, if the correction was
completed within 120 days after the defendant knew or should have
known that the violation occurred.
(5) The court may provide such equitable relief as it deems
necessary or proper.
(6)(a) The court may award attorney fees to a defendant only if
the court finds that the plaintiff had no objectively reasonable
basis for asserting a claim or for appealing an adverse decision
of the trial court.
(b) The court shall award attorney fees to a plaintiff if the
court finds that the defendant committed a violation described in
subsection (2)(c), (d) or (e) or (3)(c), (d) or (e) of this
section.
(7) An action authorized by subsection (1) of this section must
be commenced within three years after the date the plaintiff knew
or should have known of the violation, but in no instance more
than 10 years after the date of the violation.
(8) A plaintiff may recover damages provided by subsections (2)
and (3) of this section for each violation by a defendant.
(9) ORS 18.535, 18.537, 18.540 and 18.550 do not apply to
amounts awarded in actions under this section. + }
SECTION 3. { + (1) A person commits the crime of unlawfully
obtaining, retaining or disclosing genetic information if the
person knowingly, recklessly or with criminal negligence, as
those terms are defined in ORS 161.085, obtains, retains or
discloses genetic information in violation of ORS 659.700 to
659.720.
(2) Unlawfully obtaining, retaining or disclosing genetic
information is a Class A misdemeanor. + }
SECTION 4. { + (1) The Attorney General or a district attorney
may bring an action against a person who violates ORS 659.710,
659.715 or 659.720 or section 6 of this 2001 Act. In addition to
remedies otherwise provided in section 2 of this 2001 Act, the
court shall award to the Attorney General or district attorney
the costs of the investigation.
(2) The Attorney General may intervene in a civil action
brought under section 2 of this 2001 Act if the Attorney General
certifies that, in the opinion of the Attorney General, the
action is of general public importance. In the action, the
Attorney General shall be entitled to the same relief as if the
Attorney General instituted the action under this section. + }
SECTION 5. { + Sections 2 and 4 of this 2001 Act apply only to
causes of action that arise on or after the effective date of
this 2001 Act. + }
SECTION 6. { + (1)(a) The Health Division shall adopt rules
for conducting research using DNA samples, genetic testing and
genetic information. Rules establishing minimum research
standards shall conform to the Federal Policy for the Protection
of Human Subjects, 45 C.F.R. 46, that is current at the time the
rules are adopted. The rules may be changed from time to time as
may be necessary.
(b) The rules adopted by the Health Division shall address the
operation and appointment of institutional review boards. The
rules shall conform to the compositional and operational
standards for such boards contained in the Federal Policy for the
Protection of Human Subjects that is current at the time the
rules are adopted. The rules must require that research conducted
under paragraph (a) of this subsection be conducted with the
approval of the institutional review board.
(c) Persons proposing to conduct anonymous research or genetic
research that is otherwise thought to be exempt from review must
obtain from an institutional review board prior to conducting
such research a determination that the proposed research is
exempt from review.
(2) A person proposing to conduct research under subsection (1)
of this section, including anonymous research, must disclose to
the institutional review board the proposed use of DNA samples,
genetic testing or genetic information.
(3) The Health Division shall adopt rules requiring that all
institutional review boards operating under subsection (1)(b) of
this section register with the division.
(4) The Health Division shall consult with the Advisory
Committee on Genetic Privacy and Research before adopting the
rules required under subsections (1) and (3) of this section,
including rules identifying those parts of the Federal Policy for
the Protection of Human Subjects that are applicable to this
section.
(5) In consultation with the Advisory Committee on Genetic
Privacy and Research, the Health Division shall promulgate
guidelines for genetic research in which the identity of the
individual providing a DNA sample is protected by an encryption
or coding system. The division shall base the guidelines on
recommendations of credible national and state organizations.
(6) Research conducted in accordance with this section is
rebuttably presumed to comply with ORS 659.710 and 659.720.
(7) In cases in which informed consent is required by either
ORS 659.710 or the Federal Policy for the Protection of Human
Subjects, samples collected before the effective date of this
2001 Act with blanket informed consent for research may be used
for genetic research without specific informed consent, but
samples obtained after the effective date of this 2001 Act must
have specific informed consent from the individual for genetic
research.
(8) Except as otherwise allowed by rule of the Health Division,
if DNA samples or genetic information obtained for either
clinical or research purposes is used in research, a person may
not recontact the individual or the individual's physician by
using research information with personal identifiers. The Health
Division shall adopt by rule criteria for recontacting an
individual or an individual's physician. In adopting the
criteria, the division shall consider the recommendations of
national organizations such as those created by executive order
by the President of the United States and the recommendations of
the Advisory Committee on Genetic Privacy and Research. + }
SECTION 7. { + (1) The Advisory Committee on Genetic Privacy
and Research is established consisting of 14 members. The
President of the Senate and the Speaker of the House of
Representatives shall each appoint one member and one alternate.
The Assistant Director for Health shall appoint one
representative and one alternate from each of the following
categories:
(a) Academic institutions involved in genetic research;
(b) Physicians licensed under ORS chapter 677;
(c) Voluntary organizations involved in the development of
public policy on issues related to genetic privacy;
(d) Hospitals;
(e) The Health Division;
(f) The Department of Consumer and Business Services;
(g) Health care service contractors involved in genetic and
health services research;
(h) The biosciences industry;
(i) The pharmaceutical industry;
(j) Health care consumers;
(k) Organizations advocating for privacy of medical
information; and
(L) Public members of institutional review boards.
(2) Organizations and individuals representing the categories
listed in subsection (1) of this section may recommend nominees
for membership on the advisory committee to the President, the
Speaker and the assistant director.
(3) Members and alternate members of the advisory committee
serve two-year terms and may be reappointed.
(4) Members and alternate members of the advisory committee
serve at the pleasure of the appointing entity.
(5) The Health Division shall provide staff for the advisory
committee.
(6) The advisory committee shall report biennially to the
Legislative Assembly in the manner provided by ORS 192.245. The
report shall include the activities and the results of any
studies conducted by the advisory committee. The advisory
committee may make any recommendations for legislative changes
deemed necessary by the advisory committee.
(7) The advisory committee shall study the use and disclosure
of genetic information and shall develop and refine a legal
framework that defines the rights of individuals whose DNA
samples and genetic information are collected, stored, analyzed
and disclosed.
(8) The advisory committee shall create opportunities for
public education on the scientific, legal and ethical development
within the fields of genetic privacy and research. The advisory
committee shall also elicit public input on these matters. The
advisory committee shall make reasonable efforts to obtain public
input that is representative of the diversity of opinion on this
subject. The advisory committee's recommendations to the
Legislative Assembly shall take into consideration public
concerns and values related to these matters. + }
SECTION 8. { + (1) The Advisory Committee on Genetic Privacy
and Research shall report to the Seventy-second Legislative
Assembly. The report shall include recommendations relating to:
(a) Patenting of human genes;
(b) Standards for recontacting patients who have provided
samples for genetic research;
(c) Privacy of information about genetic conditions obtained
other than through a genetic test;
(d) Privacy of persons who seek genetic counseling or genetic
testing;
(e) Whether to modify or expand current statutory provisions
requiring informed consent for genetic research; and
(f) Whether to modify the notification requirement of ORS
659.715 (2) for anonymous research.
(2) The advisory committee shall report and make
recommendations to the Seventy-third Legislative Assembly on
genetic testing and use of genetic information by insurers. + }
SECTION 9. ORS 659.036 is amended to read:
659.036. (1) It shall be an unlawful employment practice for an
employer to seek to obtain, to obtain { - , - } or to use
genetic information { - , as defined in ORS 659.700, - } of an
employee or a prospective employee { + , or of a blood relative
of the employee or prospective employee, + } to distinguish
between or discriminate against or restrict any right or benefit
otherwise due or available to an employee or a prospective
employee. { - This subsection does not prohibit an employer
from seeking, obtaining or using genetic information with
specific authorization of the employee or prospective employee
solely to determine a bona fide occupational qualification, as
may be defined by rules adopted by the Commissioner of the Bureau
of Labor and Industries. - }
(2) If an employee or a prospective employee files a complaint
with the Bureau of Labor and Industries alleging violation of
subsection (1) of this section, the bureau shall cause any
necessary investigation to be made and shall enforce subsection
(1) of this section in the manner provided in ORS 659.010 to
659.110 { - and 659.121 - } .
{ + (3) An employee or prospective employee may bring an
action under ORS 659.121 for violation of this section.
(4) For purposes of this section, 'blood relative, ' ' genetic
information' and 'obtain genetic information' have the meanings
given those terms in ORS 659.700. + }
SECTION 10. ORS 659.121 is amended to read:
659.121. (1) Any person claiming to be aggrieved by an unlawful
employment practice prohibited by ORS 25.424, 399.235, 659.030,
659.035, 659.227, 659.270, 659.295, 659.330, 659.340 or 659.400
to 659.494 may file a civil suit in circuit court for injunctive
relief and the court may order such other equitable relief as may
be appropriate, including but not limited to reinstatement or the
hiring of employees with or without back pay. Back pay liability
shall not accrue from a date more than two years prior to the
filing of a complaint with the Commissioner of the Bureau of
Labor and Industries, pursuant to ORS 659.040, or if no such
complaint has first been filed, then, more than two years prior
to the filing of the civil suit provided for in ORS 659.040,
659.045, 659.095 and this section. In any suit brought under this
subsection, the court may allow the prevailing party costs and
reasonable attorney fees at trial and on appeal.
(2) Any person claiming to be aggrieved by alleged violations
of ORS 659.033 (1) or (3), { + 659.036, + } 659.295, 659.400 to
659.449 or 659.550 may file a civil action in circuit court to
recover compensatory damages or $200, whichever is greater, and
punitive damages. In addition, the court may award relief
authorized under subsection (1) of this section and such
equitable relief as it considers appropriate. At the request of
any party, the trial of such case shall be by jury. In any action
brought under this subsection, the court may allow the prevailing
party costs and reasonable attorney fees at trial and on appeal.
Any attorney fee agreement shall be subject to approval by the
court.
(3) Where no complaint has been filed pursuant to ORS 659.040
(1) or 659.045 (1) and except as otherwise provided herein, the
civil suit or action shall be commenced within one year of the
occurrence of the alleged unlawful employment practice. Where a
complaint has been filed pursuant to ORS 659.040 (1) or 659.045
(1) the civil suit or action provided for herein shall be
commenced only in accordance with the time limitations provided
for in ORS 659.095. The filing of a complaint with the
commissioner under ORS 659.040 (1) or 659.045 (1) shall not be a
condition precedent to the filing of civil suit or action under
this section.
(4) This section shall not be construed to limit or alter in
any way the authority or power of the commissioner or to limit or
alter in any way any of the rights of an individual complainant
until and unless the complainant commences civil suit or action.
Except as provided in subsection (5) of this section, the filing
of a civil suit or action in either circuit court pursuant to
subsection (1) of this section or federal district court under
applicable federal law shall constitute both an election of
remedies as to the rights of that individual with respect to
those matters alleged in the complaint filed with the
commissioner, and a waiver with respect to the right to file a
complaint with the commissioner pursuant to ORS 659.040 (1) or
659.045 (1).
(5)(a) Where a person claiming to be aggrieved by alleged
violations of ORS 659.033 or 659.430 or applicable federal law
files a civil suit or action in circuit court or in federal
district court, that filing does not constitute an election of
remedies until such time as the trial commences.
(b) An aggrieved person may not commence a civil action under
this subsection with respect to an alleged discriminatory housing
practice which forms the basis of specific charges issued by the
commissioner if a hearings referee has commenced a hearing on the
record under this chapter with respect to such charge.
(6) Notwithstanding any other provision of ORS 659.010 to
659.121 and 659.470 to 659.545, a civil complaint alleging
violations of ORS 659.033 or 659.430 may be filed not later than
two years after the occurrence or the termination of an alleged
discriminatory housing practice, or the breach of a conciliation
agreement entered into under ORS 659.010 to 659.121 and 659.470
to 659.545, whichever occurs last. The two-year period shall not
include any time during which an administrative proceeding was
pending with respect to the housing practice or breach.
SECTION 11. 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 { + or the identity of the
individual's blood relatives + }, 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) '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.
(3) 'Blood relative' means 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.
(4) 'Clinical' means relating to or obtained through the actual
observation, diagnosis or treatment of patients and not through
research.
(5) 'Disclose' means to release, publish or otherwise make
known to a third party a DNA sample or genetic information. + }
{ - (2) - } { + (6) + } 'DNA' means deoxyribonucleic acid.
{ - (3) - } { + (7) + } '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 - } { + perform a genetic test + }. 'DNA sample'
includes DNA extracted from the specimen.
{ - (4) - } { + (8) + } { - ' 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 - } { +
'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 + }.
{ - (5) - } { + (9) + } 'Genetic information' { - is
the - } { + means + } information about an individual or
{ - family - } { + the individual's blood relatives + }
obtained from { - : - }
{ - (a) - } a genetic test { + . + } { - ; or - }
{ - (b) An individual's DNA sample. - }
{ + (10) 'Genetic research' means research using DNA samples,
genetic testing or genetic information. + }
{ - (6) - } { + (11) + } '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.
{ - (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. - }
{ + (12) 'Obtain genetic information' means performing or
getting the results of a genetic test. + }
{ - (8) - } { + (13) + } 'Person' has the meaning given in
ORS 433.045.
{ + (14) 'Research' means a systematic investigation,
including research development, testing and evaluation, designed
to develop or contribute to generalized knowledge.
(15) 'Retain a DNA sample' means the act of storing the DNA
sample.
(16) 'Retain genetic information' means making a record of the
genetic information. + }
SECTION 12. 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 - } { + an individual + } who has provided a sample, or
the identity of { - a person - } { + an individual + } from
whom genetic information has been obtained { + or the identity
of the individual's blood relatives + }, cannot be determined.
{ + (2) '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.
(3) 'Blood relative' means 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.
(4) 'Clinical' means relating to or obtained through the actual
observation, diagnosis or treatment of patients and not through
research.
(5) 'Disclose' means to release, publish or otherwise make
known to a third party a DNA sample or genetic information. + }
{ - (2) - } { + (6) + } 'DNA' means deoxyribonucleic acid.
{ - (3) - } { + (7) + } '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 - } { + perform a genetic test + }. 'DNA sample'
includes DNA extracted from the specimen.
{ - (4) - } { + (8) + } { - ' 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 - } { +
' 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 + }.
{ - (5) - } { + (9) + } 'Genetic information' { - is
the - } { + means + } information about an individual or
{ - family - } { + the individual's blood relatives + }
obtained from { - : - }
{ - (a) - } a genetic test { + . + } { - ; or - }
{ - (b) An individual's DNA sample. - }
{ + (10) 'Genetic research' means research using DNA samples,
genetic testing or genetic information. + }
{ - (6) - } { + (11) + } '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.
{ - (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. - }
{ + (12) 'Obtain genetic information' means performing or
getting the results of a genetic test. + }
{ - (8) - } { + (13) + } 'Person' has the meaning given in
ORS 433.045.
{ + (14) 'Research' means a systematic investigation,
including research development, testing and evaluation, designed
to develop or contribute to generalized knowledge.
(15) 'Retain a DNA sample' means the act of storing the DNA
sample.
(16) 'Retain genetic information' means making a record of the
genetic information. + }
SECTION 13. 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 - } { + 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 { - the - }
{ + 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 { - an - } { + 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 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 { + 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. + }
SECTION 14. ORS 659.710 is amended to read:
659.710. (1) { - No - } { + A + } person { - shall - }
{ + 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 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 - } { + conducted after
notification pursuant to ORS 659.715 (2) + };
(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 { - . - } { + ; 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 section 6 of this 2001 Act. + }
{ - (3) - } { + (4) + } { - 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. - } { + Except as provided in
ORS 746.135 (1), + } any
{ - other - } 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 Health Division.
{ - (4) - } { + (5) + } 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 15. ORS 659.715 is amended to read:
659.715. (1) Subject to the provisions of ORS 659.036, 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 - } { +
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 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. - } { + A person may use an
individual's DNA sample or genetic information 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.
(b) The Health Division 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 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 { + conducted after
notification 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 pursuant to subsection (2) of this section + }.
(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 { + or the identity of
the individual's blood relatives.
(8) Subject to the provisions of ORS 659.700 to 659.720, 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 + }.
{ - (8) - } { + (9) + } The Health Division shall
coordinate the implementation of this section.
{ - (9) - } { + (10) + } This section applies only to
genetic information that can be identified as belonging to an
individual or { - family - } { + the individual's blood
relative + }. 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 16. ORS 659.720 is amended to read:
659.720. (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 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) 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 paternity;
(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 Health Division;
(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 section 2 (4) of
this 2001 Act;
(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 + }.
SECTION 17. ORS 746.135 is amended to read:
746.135. (1) If { - an insurance provider - } { + a
person + } asks an applicant for insurance to take a genetic test
in connection with an application for insurance, the use of the
test shall be revealed to the applicant and the
{ - provider - } { + person + } shall obtain the specific
authorization of the applicant using a form
{ - prescribed by rules of the Health Division - } { +
adopted by the Director of the Department of Consumer and
Business Services by rule + }.
(2) { - An insurance provider - } { + A person + } may not
use { - a favorable genetic test as an inducement to purchase
insurance - } { + favorable genetic information to induce the
purchase of insurance + }.
(3) { - An insurance provider - } { + A person + } may not
use genetic information to reject, deny, limit, cancel, refuse to
renew, increase the rates of, affect the terms and conditions of
or otherwise affect any policy for hospital or medical expenses.
{ + (4) A person may not use genetic information about a
blood relative to reject, deny, limit, cancel, refuse to renew,
increase the rates of, affect the terms and conditions of or
otherwise affect any policy of insurance. + }
{ - (4) - } { + (5) + } For purposes of this section, { +
' blood relative,' + } ' genetic information { - , - } '
{ + and + } 'genetic test' { - and 'insurance provider' - }
have { - those - } { + the + } meanings given { + those
terms + } in ORS 659.700.
SECTION 18. The notification requirement of ORS 659.715 (2), as
amended by section 15 of this 2001 Act, applies to DNA samples or
genetic information obtained on or after January 1, 2002.
SECTION 19. { + This 2001 Act being necessary for the
immediate preservation of the public peace, health and safety, an
emergency is declared to exist, and this 2001 Act takes effect on
its passage. + }
----------