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H.B. 56

             1     

GENETIC PRIVACY AND DISCRIMINATION

             2     
2002 GENERAL SESSION

             3     
STATE OF UTAH

             4     
Sponsor: Paul Ray

             5      This act modifies provisions related to health. The act defines terms. The act prohibits
             6      employers from using private genetic information for hiring and promotion purposes. The
             7      act places restrictions on health insurers' use of genetic information with limited exceptions.
             8      The act provides a private right of action for violations after June 2003. The act authorizes
             9      the attorney general to enforce the act. The act provides an effective date.
             10      This act affects sections of Utah Code Annotated 1953 as follows:
             11      ENACTS:
             12          26-45-101, Utah Code Annotated 1953
             13          26-45-102, Utah Code Annotated 1953
             14          26-45-103, Utah Code Annotated 1953
             15          26-45-104, Utah Code Annotated 1953
             16          26-45-105, Utah Code Annotated 1953
             17          26-45-106, Utah Code Annotated 1953
             18          31A-22-1601, Utah Code Annotated 1953
             19          31A-22-1602, Utah Code Annotated 1953
             20          34A-11-101, Utah Code Annotated 1953
             21          34A-11-102, Utah Code Annotated 1953
             22      Be it enacted by the Legislature of the state of Utah:
             23          Section 1. Section 26-45-101 is enacted to read:
             24     
CHAPTER 45. GENETIC TESTING PRIVACY ACT

             25          26-45-101. Title.
             26          This chapter is known as the "Genetic Testing Privacy Act."
             27          Section 2. Section 26-45-102 is enacted to read:


             28          26-45-102. Definitions.
             29          As used in this chapter:
             30          (1) "Blood Relative" means a person's biologically related:
             31          (a) parent;
             32          (b) grandparent;
             33          (c) child;
             34          (d) grandchild;
             35          (e) sibling;
             36          (f) uncle;
             37          (g) aunt;
             38          (h) nephew;
             39          (i) niece; or
             40          (j) first cousin.
             41          (2) "DNA" means deoxyribonucleic acid, ribonucleic acid, and chromosomes, which may
             42      be analyzed to detect heritable diseases or conditions, including the identification of carriers,
             43      predicting risk of disease, or establishing a clinical diagnosis.
             44          (3) "DNA sample" means any human biological specimen from which DNA can be
             45      extracted, or DNA extracted from such specimen.
             46          (4) (a) "Genetic analysis" or "genetic test" means the testing or analysis of an identifiable
             47      individual's DNA that results in information that is derived from the presence, absence, alteration,
             48      or mutation of an inherited gene or genes, or the presence or absence of a specific DNA marker
             49      or markers.
             50          (b) "Genetic analysis" or "genetic test" does not mean:
             51          (i) a routine physical examination;
             52          (ii) a routine chemical, blood, or urine analysis;
             53          (iii) a test to identify the presence of drugs or HIV infection; or
             54          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
             55      a disease, illness, impairment, or other disorder.
             56          (5) "Individual" means the person from whose body the DNA sample originated.
             57          (6) "Person" means any person, organization, or entity other than the individual.
             58          (7) (a) "Private genetic information" means any information about an identifiable


             59      individual that is derived from the presence, absence, alteration, or mutation of an inherited gene
             60      or genes, or the presence or absence of a specific DNA marker or markers, and which has been
             61      obtained:
             62          (i) from a genetic test or analysis of the individual's DNA; or
             63          (ii) from a genetic test or analysis of a person's DNA to whom the individual is a blood
             64      relative.
             65          (b) "Private genetic information" does not include information that is derived from:
             66          (i) a routine physical examination;
             67          (ii) a routine chemical, blood, or urine analysis;
             68          (iii) a test to identify the presence of drugs or HIV infection; or
             69          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
             70      a disease, illness, impairment, or other disorder.
             71          Section 3. Section 26-45-103 is enacted to read:
             72          26-45-103. Restrictions on employers.
             73          (1) Except as provided in Subsection (2), an employer, as defined in Section 34A-2-103 ,
             74      may not in connection with a hiring, promotion, retention, or other related decision:
             75          (a) access or otherwise take into consideration private genetic information about an
             76      individual;
             77          (b) request or require an individual to consent to a release for the purpose of accessing
             78      private genetic information about the individual;
             79          (c) request or require an individual or his blood relative to submit to a genetic test; and
             80          (d) inquire into or otherwise take into consideration the fact that an individual or his blood
             81      relative has taken or refused to take a genetic test.
             82          (2) (a) Notwithstanding Subsection (1), an employer may seek an order compelling the
             83      disclosure of private genetic information held by an individual or third party pursuant to
             84      Subsection (2)(b) in connection with:
             85          (i) an employment-related judicial or administrative proceeding in which the individual
             86      has placed his health at issue; or
             87          (ii) an employment-related decision in which the employer has a reasonable basis to
             88      believe that the individual's health condition poses a real and unjustifiable safety risk requiring the
             89      change or denial of an assignment.


             90          (b) (i) An order compelling the disclosure of private genetic information pursuant to this
             91      Subsection (2) may only be entered upon a finding that:
             92          (A) other ways of obtaining the private information are not available or would not be
             93      effective; and
             94          (B) there is a compelling need for the private genetic information which substantially
             95      outweighs the potential harm to the privacy interests of the individual.
             96          (ii) An order compelling the disclosure of private genetic information pursuant to this
             97      Subsection (2) shall:
             98          (A) limit disclosure to those parts of the record containing information essential to fulfill
             99      the objective of the order;
             100          (B) limit disclosure to those persons whose need for the information is the basis of the
             101      order; and
             102          (C) include such other measures as may be necessary to limit disclosure for the protection
             103      of the individual.
             104          Section 4. Section 26-45-104 is enacted to read:
             105          26-45-104. Restrictions on health insurers.
             106          (1) Except as provided in Subsection (2), an insurer offering health care insurance as
             107      defined in Section 31A-1-301 may not in connection with the offer or renewal of an insurance
             108      product or in the determination of premiums, coverage, renewal, cancellation, or any other
             109      underwriting decision that pertains directly to the individual or any group of which the individual
             110      is a member that purchases insurance jointly:
             111          (a) access or otherwise take into consideration private genetic information about an
             112      asymptomatic individual;
             113          (b) request or require an asymptomatic individual to consent to a release for the purpose
             114      of accessing private genetic information about the individual;
             115          (c) request or require an asymptomatic individual or his blood relative to submit to a
             116      genetic test; and
             117          (d) inquire into or otherwise take into consideration the fact that an asymptomatic
             118      individual or his blood relative has taken or refused to take a genetic test.
             119          (2) An insurer offering health care insurance:
             120          (a) may request h [ and obtain ] h information regarding the necessity of a genetic test, but
             120a      not


             121      the results of the test, if a claim for payment for the test has been made against an individual's
             122      health insurance policy;
             123          (b) may request h [ and obtain ] h that portion of private genetic information that is
             123a      necessary to
             124      determine the insurer's obligation to pay for health care services where:
             125          (i) the primary basis for rendering such services to an individual is the result of a genetic
             126      test; and
             127          (ii) a claim for payment for such services has been made against the individual's health
             128      insurance policy;
             129          (c) may only store information obtained under this Subsection (2) h [ until the insurer's
             130      obligation to pay for a genetic test or health care services has been fully resolved
] IN ACCORDANCE

             130a      WITH THE PROVISIONS OF THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF
             130b      1996 h ; and
             131          (d) may only use or otherwise disclose the information obtained under this Subsection (2)
             132      in connection with a proceeding to determine the obligation of an insurer to pay for a genetic test
             133      or health care services, provided that h [ : ] , IN ACCORDANCE WITH THE PROVISIONS OF THE
             133a      HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996, THE INSURER MAKES A
             133b      REASONABLE EFFORT TO LIMIT DISCLOSURE TO THE MINIMUM NECESSARY TO CARRY OUT THE
             133c      PURPOSES OF THE DISCLOSURE. h
             134           h [ (i) the disclosure of the information is limited to those persons who are direct participants
             135      in the proceeding with a legitimate need to know the information;
             136          (ii) the disclosure does not include disclosure of payment for a genetic test to a shared
             137      insurance industry database; and
             138          (iii) reasonable measures have been taken to limit disclosure for the protection of the
             139      individual.
] h

             140          (3) (a) An insurer may, to the extent permitted by Subsection (2), seek an order compelling
             141      the disclosure of private genetic information held by an individual or third party.
             142          (b) An order authorizing the disclosure of private genetic information pursuant to this
             143      Subsection (2) shall:
             144          (i) limit disclosure to those parts of the record containing information essential to fulfill
             145      the objectives of the order;
             146          (ii) limit disclosure to those persons whose need for the information is the basis for the
             147      order; and
             148          (iii) include such other measures as may be necessary to limit disclosure for the protection
             149      of the individual.


             150          (4) Nothing in this section may be construed as restricting the ability of an insurer to use
             151      information other than private genetic information to take into account the health status of an


             152      individual, group, or population in determining premiums or making other underwriting decisions.
             153          (5) Nothing in this section may be construed as requiring an insurer to pay for genetic
             154      testing.
             155          (6) Information maintained by an insurer about an individual under this section may be
             156      redisclosed:
             157          (a) h [ except as prohibited by Subsection (2)(d)(ii), ] h to protect the interests of the insurer in
             158      detecting, prosecuting, or taking legal action against criminal activity, fraud, material
             159      misrepresentations, and material omissions;
             160          (b) to enable business decisions to be made about the purchase, transfer, merger,
             161      reinsurance, or sale of all or part of the insurer's business; and
             162          (c) to the commissioner of insurance upon formal request.
             163          Section 5. Section 26-45-105 is enacted to read:
             164          26-45-105. Private right of action.
             165          (1) An individual whose legal rights arising under this chapter have been violated after
             166      June 30, 2003, may recover damages and be granted equitable relief in a civil action.
             167          (2) Any h [ person ] INSURANCE COMPANY OR EMPLOYER h who violates the legal rights
             167a      of an individual arising from this chapter shall
             168      be liable to the individual for each separate violation in an amount equal to:
             169          (a) actual damages sustained as a result of the violation;
             170          (b) (i) $100,000 if the violation is the result of an intentional and wilful act; or
             171          (ii) punitive damages if the violation is the result of a malicious act; and
             172          (c) reasonable attorneys' fees.
             173          Section 6. Section 26-45-106 is enacted to read:
             174          26-45-106. Enforcement.
             175          (1) Whenever the attorney general has reason to believe that any person is using or is about
             176      to use any method, act, or practice in violation of the provisions of this chapter, and that
             177      proceedings would be in the public interest, the attorney general may bring an action against the
             178      person to restrain or enjoin the use of such method, act, or practice.
             179          (2) In addition to restraining or enjoining the use of a method, act, or practice, the court
             180      may, after June 30, 2003, require the payment of:
             181          (a) a civil fine of not more than $25,000 for each separate intentional violation; and
             182          (b) reasonable costs of investigation and litigation, including reasonable attorneys' fees.


             183          Section 7. Section 31A-22-1601 is enacted to read:
             184     
Part 16. Genetic Testing Restrictions on Insurers

             185          31A-22-1601. Title.
             186          This part is known as the "Genetic Testing Restrictions on Insurers Act."
             187          Section 8. Section 31A-22-1602 is enacted to read:
             188          31A-22-1602. Genetic testing restrictions.
             189          With respect to matters related to genetic testing and private genetic information, an insurer
             190      shall comply with Section 26-45-104 and the other applicable provisions of Title 26, Chapter 45,
             191      Genetic Testing Privacy Act.
             192          Section 9. Section 34A-11-101 is enacted to read:
             193     
CHAPTER 11. GENETIC TESTING RESTRICTIONS ON EMPLOYERS ACT

             194          34A-11-101. Title.
             195          This chapter is known as the "Genetic Testing Restrictions on Employers Act."
             196          Section 10. Section 34A-11-102 is enacted to read:
             197          34A-11-102. Restrictions on employers.
             198          With respect to matters related to genetic testing and private genetic information, an
             199      employer shall comply with Section 26-45-103 and the other applicable provisions of Title 26,
             200      Chapter 45, Genetic Testing Privacy Act.
             201          Section 11. Effective date.
             202          This act takes effect on January 1, 2003.




Legislative Review Note
    as of 11-20-01 8:32 AM


A limited legal review of this legislation raises no obvious constitutional or statutory concerns.

Office of Legislative Research and General Counsel


Committee Note

The Health and Human Services Interim Committee recommended this bill.


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