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First Substitute H.B. 177

Representative Nora B. Stephens proposes to substitute the following bill:


             1     
GENETIC TESTING PRIVACY ACT

             2     
1999 GENERAL SESSION

             3     
STATE OF UTAH

             4     
Sponsor: Nora B. Stephens

             5      AN ACT RELATING TO HEALTH; ENACTING THE GENETIC TESTING PRIVACY ACT;
             6      DEFINING TERMS; REQUIRING VERBAL INFORMED CONSENT PURSUANT TO AN
             7      INSTITUTION'S WRITTEN PROTOCOL PRIOR TO COLLECTING A DNA SAMPLE FOR
             8      GENETIC ANALYSIS; REQUIRING WRITTEN CONSENT PURSUANT TO AN
             9      INSTITUTION'S WRITTEN PROTOCOL TO DISCLOSE PRIVATE GENETIC
             10      INFORMATION TO A THIRD PARTY; PLACING RESTRICTIONS ON EMPLOYERS AND
             11      INSURERS WITH LIMITED EXCEPTIONS; ESTABLISHING EXCEPTIONS TO THE
             12      REQUIREMENT OF INFORMED CONSENT; PERMITTING COMPELLED DISCLOSURE
             13      OF PRIVATE GENETIC INFORMATION IN LIMITED CIRCUMSTANCES; PROVIDING A
             14      PRIVATE RIGHT OF ACTION FOR VIOLATIONS AFTER JUNE 2000; AUTHORIZING THE
             15      ATTORNEY GENERAL TO ENFORCE THE ACT; AND PROVIDING AN EFFECTIVE
             16      DATE.
             17      This act affects sections of Utah Code Annotated 1953 as follows:
             18      AMENDS:
             19          63-2-202, as last amended by Chapter 312, Laws of Utah 1994
             20          63-2-302, as last amended by Chapter 303, Laws of Utah 1998
             21      ENACTS:
             22          26-44-101, Utah Code Annotated 1953
             23          26-44-102, Utah Code Annotated 1953
             24          26-44-103, Utah Code Annotated 1953
             25          26-44-104, Utah Code Annotated 1953


             26          26-44-105, Utah Code Annotated 1953
             27          26-44-106, Utah Code Annotated 1953
             28          26-44-107, Utah Code Annotated 1953
             29          26-44-108, Utah Code Annotated 1953
             30          26-44-109, Utah Code Annotated 1953
             31          26-44-110, Utah Code Annotated 1953
             32          26-44-111, Utah Code Annotated 1953
             33          31A-22-1601, Utah Code Annotated 1953
             34          31A-22-1602, Utah Code Annotated 1953
             35          34A-9-101, Utah Code Annotated 1953
             36          34A-9-102, Utah Code Annotated 1953
             37      Be it enacted by the Legislature of the state of Utah:
             38          Section 1. Section 26-44-101 is enacted to read:
             39     
CHAPTER 44. GENETIC TESTING PRIVACY ACT

             40          26-44-101. Title.
             41          This chapter is known as the "Genetic Testing Privacy Act."
             42          Section 2. Section 26-44-102 is enacted to read:
             43          26-44-102. Definitions.
             44          As used in this chapter:
             45          (1) "Blood relative" means a person's biologically related:
             46          (a) parent;
             47          (b) grandparent;
             48          (c) child;
             49          (d) grandchild;
             50          (e) sibling;
             51          (f) uncle;
             52          (g) aunt;
             53          (h) nephew;
             54          (i) niece; or
             55          (j) first cousin.
             56          (2) "Compulsory disclosure" means any disclosure of private genetic information


             57      mandated or required by federal law, state law, or Section 26-44-109 .
             58          (3) "Disclose" or "disclosure" means to convey or to provide access to private genetic
             59      information to a person other than the individual.
             60          (4) "DNA" means deoxyribonucleic acid, ribonucleic acid, and chromosomes, which may
             61      be analyzed to detect heritable diseases or conditions, including the identification of carriers,
             62      predicting risk of disease, or establishing a clinical diagnosis.
             63          (5) "DNA sample" means any human biological specimen from which DNA can be
             64      extracted, or DNA extracted from such specimen.
             65          (6) "DNA typing" means a scientifically reliable method for characterizing and comparing
             66      sequences of DNA, and applying a statistical analysis of population frequency to determine that
             67      if the DNA sequences match, the probability that the match occurs by chance.
             68          (7) (a) "Genetic analysis" or "genetic test" means the testing or analysis of an identifiable
             69      individual's DNA that results in information that is derived from the presence, absence, alteration,
             70      or mutation of an inherited gene or genes, or the presence or absence of a specific DNA marker
             71      or markers.
             72          (b) "Genetic analysis" or "genetic test" does not mean:
             73          (i) a routine physical examination;
             74          (ii) a routine chemical, blood, or urine analysis;
             75          (iii) a test to identify the presence of drugs or HIV infection; or
             76          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of a
             77      disease, illness, impairment, or other disorder.
             78          (8) (a) "Individual" means the person from whose body the DNA sample originated unless
             79      Subsection (b) or (c) applies.
             80          (b) In the event that the person from whose body the DNA sample originated is a minor
             81      or an incompetent person, "individual" means the person with the legal authority to make health
             82      care decisions on behalf of the minor or incompetent person.
             83          (c) In the event that the person from whose body the DNA sample originated is deceased,
             84      "individual" means, in the following order of priority, the deceased person's:
             85          (i) estate administrator or executor;
             86          (ii) legal guardian;
             87          (iii) spouse;


             88          (iv) parent; or
             89          (v) child 18 years of age or older.
             90          (9) "Individual identifier" means a name, address, Social Security number, health insurance
             91      identification number, or similar information by which the identity of an individual can be
             92      determined with reasonable accuracy. The term does not include information that has been
             93      anonymized through encryption or encoding.
             94          (10) "Institutional Review Board" means a board established in accordance with 45 CFR
             95      46.102(g)(1992) as such regulation may be amended.
             96          (11) "Legal rights" means any statutory or contractual right that arises as a result of or in
             97      connection with the provisions of this chapter.
             98          (12) "Person" means any person, organization, or entity other than the individual.
             99          (13) (a) "Private genetic information" means any information about an identifiable
             100      individual that is derived from the presence, absence, alteration, or mutation of an inherited gene
             101      or genes, or the presence or absence of a specific DNA marker or markers, and which has been
             102      obtained:
             103          (i) from a genetic test or analysis of the individual's DNA; or
             104          (ii) from a genetic test or analysis of a person's DNA to whom the individual is a blood
             105      relative.
             106          (b) "Private genetic information" does not include information that is derived from:
             107          (i) a routine physical examination;
             108          (ii) a routine chemical, blood, or urine analysis;
             109          (iii) a test to identify the presence of drugs or HIV infection; or
             110          (iv) a test performed due to the presence of signs, symptoms, or other manifestations of
             111      a disease, illness, impairment, or other disorder.
             112          (14) "Verbal informed consent" means a face-to-face exchange in which an individual is
             113      informed of the significance of undergoing a genetic test and the unique health information that
             114      may result from such a test in a manner that complies with written protocols for verbal informed
             115      consent for genetic testing privacy adopted by:
             116          (a) the clinical institution under whose direction informed consent is being sought; or
             117          (b) the research institution under whose direction informed consent is being sought,
             118      provided that the written protocols have been approved by an institutional review board.


             119          (15) "Prior written authorization" means a document signed and dated by an individual
             120      authorizing the disclosure of private genetic information to a person or class of persons after being
             121      informed of the significance of the authorization in a manner that complies with written protocols
             122      for prior written authorization for disclosure of private genetic information adopted by:
             123          (a) the institution in possession of the individual's private genetic information; and
             124          (b) an institutional review board, if the institution in possession of the individual's private
             125      genetic information conducts research.
             126          Section 3. Section 26-44-103 is enacted to read:
             127          26-44-103. DNA samples collected before or after July 1, 1999.
             128          Except as provided in Section 26-44-108 , an individually identifiable DNA sample
             129      collected in this state:
             130          (1) for genetic analysis on or after July 1,1999, may only be collected, analyzed, stored,
             131      and used for research or other purposes to the extent expressly permitted by and in strict
             132      accordance with informed consent obtained in compliance with the requirements of Section
             133      26-44-104 ;
             134          (2) before July 1, 1999, may be subject to genetic analysis for clinical purposes without
             135      complying with the provisions of Section 26-44-104 ; and
             136          (3) before July 1, 1999, may be subject to genetic analysis for research purposes:
             137          (a) in accordance with the specific purpose for which the sample was originally collected;
             138          (b) after the sample has been permanently anonymized through the removal and
             139      destruction of individual identifiers; or
             140          (c) in connection with a research protocol approved by an institutional review board and:
             141          (i) the informed consent requirements of Section 26-44-104 are met; or
             142          (ii) a person who serves as a custodian of records and is not directly involved in research
             143      or genetic analysis:
             144          (A) directs the removal of all individually identifying information from the DNA sample
             145      before the sample is analyzed in connection with the approved research protocol;
             146          (B) if the identifying information is not destroyed, maintains the confidentiality of
             147      individually identifying information and stores the information in a manner in which only the
             148      custodian of records and his direct subordinates have access to the information; and
             149          (C) only uses stored individually identifying information if:


             150          (I) the use is necessary to further a legitimate research purpose which is approved by an
             151      institutional review board;
             152          (II) the confidentiality of the information can be maintained in accordance with Subsection
             153      (3)(c)(ii)(B); and
             154          (III) the disclosure of individually identifying information is limited to the individual, the
             155      individual's next of kin, and the individual's health care providers.
             156          Section 4. Section 26-44-104 is enacted to read:
             157          26-44-104. Informed consent for genetic testing.
             158          (1) Except as provided in Section 26-44-108 , no person may collect or cause to be
             159      collected an individually identifiable DNA sample in this state for genetic analysis without:
             160          (a) obtaining verbal informed consent; and
             161          (b) informing the individual of the existence of the institution's written protocol for genetic
             162      testing privacy.
             163          (2) A person may not perform a genetic test on an individually identifiable DNA sample
             164      if that person has actual knowledge that the individual:
             165          (a) was in Utah at the time the sample was collected; and
             166          (b) did not give informed consent in the manner required by Subsection (1).
             167          (3) (a) Insurers and employers are prohibited from seeking an individual's informed
             168      consent for genetic testing.
             169          (b) Notwithstanding Subsection (3)(a), a health care provider who is employed by an
             170      insurer to provide direct heath care services to insureds may seek an individual's informed consent
             171      for genetic testing as long as:
             172          (i) the request is for a legitimate medical purpose; and
             173          (ii) the insurer does not have access to the resulting private genetic information, except to
             174      the extent permitted in Subsection 26-44-107 (2).
             175          (4) An individual shall be given a copy of an institution's written protocol for genetic
             176      testing privacy upon request.
             177          Section 5. Section 26-44-105 is enacted to read:
             178          26-44-105. Disclosure of private genetic information.
             179          (1) Except as provided in Sections 26-44-108 and 26-44-109 , no person who, in the
             180      ordinary course of business, practice of a profession, or rendering of a service, creates, stores,


             181      receives, or furnishes private genetic information, may disclose private genetic information to any
             182      other person without:
             183          (a) the prior written authorization of the individual; and
             184          (b) informing the individual of the existence of the institution's written protocol for
             185      disclosure of private genetic information.
             186          (2) A copy of the written authorization shall be provided to the individual. A copy of the
             187      institution's written protocol for disclosure of private genetic information shall be given to the
             188      individual upon request.
             189          (3) An individual may revoke or amend the authorization at any time by contacting the
             190      person to whom authorization was given.
             191          (4) An individual may not maintain an action against a person for disclosure of private
             192      genetic information made in good faith reliance on a valid written authorization if the person had
             193      no notice of the revocation of the authorization at the time the disclosure was made.
             194          (5) Each disclosure made pursuant to a written authorization described in Subsection (1)
             195      shall be accompanied by the following written statement: "This information has been disclosed to
             196      you from private records protected under the Genetic Testing Privacy Act and any further
             197      disclosure of the information without specific authorization from the individual is prohibited."
             198          (6) A general authorization for the release of medical records or medical information may
             199      not be used as a written authorization for the disclosure of private genetic information.
             200          (7) An insurer may only use this section to access an individual's private genetic
             201      information:
             202          (a) to determine the insurer's obligation to pay for a genetic test or health care services
             203      under Subsection 26-44-107 (2); or
             204          (b) as permitted in Subsection 26-44-107 (4)(b).
             205          (8) An employer may not use this section to access an individual's private genetic
             206      information unless the individual has knowingly and voluntarily waived his right to have a court
             207      or administrative law judge make a determination as to whether the disclosure of private genetic
             208      information should be compelled under Section 26-44-108 .
             209          (9) Private genetic information in the possession of an employer or insurer may not be
             210      disclosed by means of a written authorization to any person other than:
             211          (a) the individual; and


             212          (b) the individual's health care provider.
             213          Section 6. Section 26-44-106 is enacted to read:
             214          26-44-106. Restrictions on employers.
             215          (1) Except as provided in Subsection (2), an employer, as defined in Section 34A-2-103 ,
             216      may not in connection with a hiring, promotion, retention, or other related decision:
             217          (a) access or otherwise take into consideration private genetic information about an
             218      individual;
             219          (b) request or require an individual to consent to a release for the purpose of accessing
             220      private genetic information about the individual;
             221          (c) request or require an individual or his blood relative to submit to a genetic test; and
             222          (d) inquire into or otherwise take into consideration the fact that an individual or his blood
             223      relative has taken or refused to take a genetic test.
             224          (2) (a) Notwithstanding Subsection (1), an employer may seek an order compelling the
             225      disclosure of private genetic information held by an individual or third party pursuant to Section
             226      26-44-109 in connection with:
             227          (i) an employment-related judicial or administrative proceeding in which the individual
             228      has placed his health at issue; or
             229          (ii) an employment-related decision in which the employer has a reasonable basis to
             230      believe that the individual's health condition poses a real and unjustifiable safety risk requiring the
             231      change or denial of an assignment.
             232          (b) An order compelling the disclosure of private genetic information may only be entered
             233      if the requirements of Subsections 26-44-109 (4) and (5) have been met.
             234          Section 7. Section 26-44-107 is enacted to read:
             235          26-44-107. Restrictions on insurers.
             236          (1) Except as provided in Subsections (2) and (4), an insurer may not in connection with
             237      the offer or renewal of an insurance product or in the determination of premiums, coverage,
             238      renewal, cancellation, or any other underwriting decision that pertains directly to the individual
             239      or any group of which the individual is a member that purchases insurance jointly:
             240          (a) access or otherwise take into consideration private genetic information about an
             241      individual;
             242          (b) request or require an individual to consent to a release for the purpose of accessing


             243      private genetic information about the individual;
             244          (c) request or require an individual or his blood relative to submit to a genetic test; and
             245          (d) inquire into or otherwise take into consideration the fact that an individual or his blood
             246      relative has taken or refused to take a genetic test.
             247          (2) With respect to health insurance, as defined in Subsection 31A-1-301 (35), an insurer:
             248          (a) may request and obtain information regarding the necessity of a genetic test, but not
             249      the results of the test, if a claim for payment for the test has been made against an individual's
             250      health insurance policy;
             251          (b) may request and obtain that portion of private genetic information that is necessary to
             252      determine the insurer's obligation to pay for health care services where:
             253          (i) the primary basis for rendering such services to an individual is the result of a genetic
             254      test; and
             255          (ii) a claim for payment for such services has been made against the individual's health
             256      insurance policy;
             257          (c) may only store information obtained under this Subsection (2) until the insurer's
             258      obligation to pay for a genetic test or health care services has been fully resolved; and
             259          (d) may only use or otherwise disclose the information in connection with a proceeding
             260      to determine the obligation of an insurer to pay for a genetic test or health care services, provided
             261      that:
             262          (i) the disclosure of the information is limited to those persons who are direct participants
             263      in the proceeding with a legitimate need to know the information; and
             264          (ii) reasonable measures have been taken to limit disclosure for the protection of the
             265      individual.
             266          (3) (a) An insurer may, to the extent permitted by Subsection (2), seek an order compelling
             267      the disclosure of private genetic information held by an individual or third party pursuant to
             268      Section 26-44-109 .
             269          (b) An action brought in accordance with Subsection (2) shall be presumed to meet the
             270      finding requirement of Subsection 26-44-109 (4).
             271          (c) An order authorizing the disclosure of private genetic information shall comply with
             272      Subsection 26-44-109 (5).
             273          (4) With respect to insurance other than health insurance, an insurer may in connection


             274      with the offer or renewal of an insurance policy or in the determination of premiums, coverage,
             275      or renewal:
             276          (a) inquire into whether the individual or any other blood relative has undergone a genetic
             277      test and what the results of the test, if known, were;
             278          (b) if the individual has undergone a genetic test, is aware of the results of that test, and
             279      requests more than the average amount of coverage for a person of similar age and income, request
             280      the individual to release his private genetic information to the insurer;
             281          (c) store information obtained under Subsection (4)(b) for 60 days before it must be
             282      destroyed; and
             283          (d) record the disposition of an application based on information obtained under
             284      Subsection (4)(b) and the risk associated with the individual as long as there is no mention of a
             285      specific illness, disease, or other health condition.
             286          (5) Nothing in Subsection (4) may be construed as:
             287          (a) permitting an insurer to disclose private genetic information or the insurer's disposition
             288      of an insurance application based on private genetic information to a person other than the
             289      individual, except as provided in Subsection (7); or
             290          (b) restricting the right of an insurer to deny a claim in accordance with the terms of an
             291      insurance policy or otherwise seeking relief if information properly requested under Subsection
             292      (4)(a) was knowingly withheld.
             293          (6) Outside of private genetic information, nothing in this section may be construed as
             294      restricting the ability of an insurer to take into account the health status of an individual, group,
             295      or population in determining premiums or making other underwriting decisions.
             296          (7) Information maintained by an insurer about an individual under this section may be
             297      redisclosed:
             298          (a) to protect the interests of the insurer in detecting, prosecuting, or taking legal action
             299      against criminal activity, fraud, material misrepresentations, and material omissions;
             300          (b) to enable business decisions to be made about the purchase, transfer, merger,
             301      reinsurance, or sale of all or part of the insurer's business; and
             302          (c) to the commissioner of insurance upon formal request.
             303          Section 8. Section 26-44-108 is enacted to read:
             304          26-44-108. Exceptions to informed consent.


             305          (1) Notwithstanding any other provision in this chapter, a person may provide access to
             306      an individually identifiable DNA sample, or to data derived from DNA typing, to assist in the
             307      identification of a dead body h OR THE CAUSE OF DEATH h , provided that the analysis of any
             307a      sample so provided and the analysis
             308      of any DNA sample from the dead body is limited to that which is necessary to determine the
             309      identity of the dead body.
             310          (2) Nothing in this chapter may be construed to affect criminal investigations, criminal
             311      proceedings, or the authority of law enforcement agencies under Title 53, Chapter
             311a      h [ 5, Part 10 ] 10 h ,
             312      Criminal Investigations and Technical Services Division, in collecting, storing, testing, typing, and
             313      controlling access to DNA samples in the course of conducting criminal investigations.
             314          (3) (a) With the exception of Sections 26-44-106 and 26-44-107 , which apply to insurers
             315      and employers, nothing in this chapter may be construed to prohibit the collection or analysis of
             316      an individually identifiable DNA sample pursuant to Title 62A, Chapter 11, Recovery Services;
             317      Title 78, Chapter 45a, Uniform Act on Paternity; or Rule 35 of the Utah Rules of Civil Procedure
             318      if the provisions of this Subsection (3) have been met.
             319          (b) An order or agency request under Subsection (3)(a) may only be entered upon a finding
             320      that:
             321          (i) the genetic condition of the individual has been placed at issue;
             322          (ii) other ways of obtaining the private information are not available or would not be
             323      effective; and
             324          (iii) there is a compelling need for the private genetic information which substantially
             325      outweighs the potential harm to the privacy interests of the individual.
             326          (c) An order or agency request under Subsection (3)(a) shall specify:
             327          (i) the manner of collection of the DNA sample;
             328          (ii) the person or persons authorized to collect and analyze the DNA sample;
             329          (iii) the purpose of the genetic analysis;
             330          (iv) that the genetic analysis is limited to that which is necessary to fulfill the purpose of
             331      the order or request;
             332          (v) that the sample may only be stored until the matter underlying the order or agency
             333      request has been resolved and the time for appeal has lapsed;
             334          (vi) those persons to whom disclosure of the resulting private genetic information may be
             335      made because of a compelling need to know such information; and


             336          (vii) such other measures as may be necessary to limit disclosure of the resulting private
             337      genetic information for the protection of the individual.
             338          (d) A paternity action brought under Subsection (3)(a) shall be presumed to meet the
             339      finding requirement of Subsection (3)(b).
             340          Section 9. Section 26-44-109 is enacted to read:
             341          26-44-109. Compulsory disclosure of private genetic information.
             342          (1) No person, including an individual, who maintains private genetic information may be
             343      compelled to disclose such information pursuant to a request for compulsory disclosure in any
             344      judicial, legislative, or administrative proceeding unless:
             345          (a) the person maintaining the genetic information has received the authorization of the
             346      individual to release the information in response to the request for compulsory disclosure;
             347          (b) the individual is a party to or the subject of the proceeding, the private genetic
             348      information is at issue, and the requirements of Section 26-44-106 and 26-44-107 , if applicable,
             349      have been met; or
             350          (c) the genetic information is for use in a law enforcement proceeding or investigation in
             351      which the person maintaining the information is the subject or a party.
             352          (2) (a) A person requesting compulsory disclosure pursuant to Subsection (1)(b) or (c)
             353      shall serve upon the person maintaining the genetic information and upon the individual:
             354          (i) a copy of the request at least ten days prior to the date on which the compulsory
             355      disclosure is requested; and
             356          (ii) a statement of the right of the individual or person maintaining the genetic information
             357      to have any objections to compulsory disclosure heard by the court, legislature, or administrative
             358      agency prior to the issuance of a compulsory disclosure order, and the procedure to be followed
             359      to have any such objections heard.
             360          (b) Service under Subsection (2)(a) may be sent by certified mail, return receipt requested,
             361      or hand-delivered.
             362          (3) Service of a compulsory disclosure request upon a person maintaining private genetic
             363      information shall be accompanied by a written certification, signed by the person seeking to obtain
             364      the private genetic information or his authorized representative:
             365          (a) identifying at least one subsection of Section (1) in justification of compulsory
             366      disclosure; and


             367          (b) indicating that the notice requirement of Subsection (2)(a) has been met.
             368          (4) An order under this section may only be entered upon a finding that:
             369          (a) other ways of obtaining the private information are not available or would not be
             370      effective; and
             371          (b) there is a compelling need for the private genetic information which substantially
             372      outweighs the potential harm to the privacy interests of the individual.
             373          (5) An order under this section which authorizes the disclosure of private genetic
             374      information shall:
             375          (a) limit disclosure to those parts of the record containing such information as is essential
             376      to fulfill the objective of the order;
             377          (b) limit disclosure to those persons whose need for the information is the basis of the
             378      order; and
             379          (c) include such other measures as may be necessary to limit disclosure for the protection
             380      of the individual.
             381          Section 10. Section 26-44-110 is enacted to read:
             382          26-44-110. Private right of action.
             383          (1) An individual whose legal rights arising under this chapter have been violated after
             384      June 30, 2000, may recover damages and be granted equitable relief in a civil action.
             385          (2) Any person who h [ unintentionally ] h violates the legal rights of an individual arising
             385a      from
             386      this chapter shall be liable to the individual for each separate violation in an amount equal to:
             387          (a) actual damages sustained as a result of the violation or h [ $5,000 , whichever is greater; ] :
             387a           (i) $2,500 IF THE VIOLATION IS THE RESULT OF NEGLIGENCE;
             387b          (ii) $5,000 IF THE VIOLATION IS THE RESULT OF GROSS NEGLIGENCE;                       
             387c          (iii) $15,000 IF THE VIOLATION IS THE RESULT OF AN INTENTIONAL AND WILFUL ACT; OR
             388d          (iv) $30,000 IF THE VIOLATION IS THE RESULT OF A MALICIOUS ACT; AND h
             388           h [ (b) treble damages, if the violation resulted in profit or monetary gain; and
             389          (c) reasonable attorneys' fees and costs.
             390          (3) Any person who intentionally induces a person to violate the legal rights of an
             391      individual arising from this chapter, or who, himself, intentionally violates the legal rights of an
             392      individual arising from this chapter shall be liable to the individual for each separate violation in
             393      an amount equal to:
             394          (a) actual damages sustained as a result of the violation or $15,000, whichever is greater;
             395          (b) punitive damages as the court may allow; and
h


             396           h
(c) reasonable attorneys' fees and costs. ]
             396a          (b) REASONABLE ATTORNEYS FEES UP TO $5,000.
             396b          (3) A PERSON IS NOT LIABLE FOR DAMAGES UNDER SUBSECTION (2) IF THE PERSON:
             396c          (a) CORRECTED A VIOLATION UNDER SUBSECTION (2)(a)(i) OR (ii) WITHIN THREE
             396d      WORKING DAYS OF HAVING KNOWLEDGE OF THE VIOLATION; AND
             396e          (b) NO ACTUAL HARM RESULTED FROM THE VIOLATION. h
             397          Section 11. Section 26-44-111 is enacted to read:


             398          26-44-111. Enforcement.
             399          (1) Whenever the attorney general has reason to believe that any person is using or is about
             400      to use any method, act, or practice in violation of the provisions of this chapter, and that
             401      proceedings would be in the public interest, the attorney general may bring an action against the
             402      person to restrain or enjoin the use of such method, act, or practice.
             403          (2) In addition to restraining or enjoining the use of a method, act, or practice, the court
             404      may, after June 30, 2000, require the payment of:
             405          (a) a civil fine of not more than h [ :
             406          (i) $10,000 for each separate unintentional violation; and
             407          (ii) $30,000
] $15,000 h
for each separate intentional violation; and
             408          (b) reasonable costs of investigation and litigation, including reasonable attorneys' fees.
             409          Section 12. Section 31A-22-1601 is enacted to read:
             410     
Part 16. Genetic Testing Restrictions on Insurers

             411          31A-22-1601. Title.
             412          This part is known as the "Genetic Testing Restrictions on Insurers Act."
             413          Section 13. Section 31A-22-1602 is enacted to read:
             414          31A-22-1602. Genetic testing restrictions.
             415          With respect to matters related to genetic testing and private genetic information, an insurer
             416      shall comply with Section 26-44-107 and the other applicable provisions of Title 26, Chapter 44,
             417      Genetic Testing Privacy Act.
             418          Section 14. Section 34A-9-101 is enacted to read:
             419     
CHAPTER 9. GENETIC TESTING RESTRICTIONS ON EMPLOYERS ACT

             420          34A-9-101. Title.
             421          This part is known as the "Genetic Testing Restrictions on Employers Act."
             422          Section 15. Section 34A-9-102 is enacted to read:
             423          34A-9-102. Restrictions on employers.
             424          With respect to matters related to genetic testing and private genetic information, an
             425      employer shall comply with Section 26-44-106 and the other applicable provisions of Title 26,
             426      Chapter 44, Genetic Testing Privacy Act.
             427          Section 16. Section 63-2-202 is amended to read:
             428           63-2-202. Access to private, controlled, and protected documents.


             429          (1) Upon request, a governmental entity shall disclose a private record to:
             430          (a) the subject of the record;
             431          (b) the parent or legal guardian of an unemancipated minor who is the subject of the
             432      record;
             433          (c) the legal guardian of a legally incapacitated individual who is the subject of the record;
             434          (d) any other individual who:
             435          (i) has a power of attorney from the subject of the record;
             436          (ii) submits a notarized release from the subject of the record or his legal representative
             437      dated no more than 90 days before the date the request is made; or
             438          (iii) if the record is a medical record described in Subsection 63-2-302 (1)(b), is a health
             439      care provider, as defined in Subsection 26-33a-102 (7), if releasing the record or information in the
             440      record is consistent with normal professional practice and medical ethics and Title 26, Chapter 44,
             441      Genetic Testing Privacy Act; or
             442          (e) any person to whom the record must be provided pursuant to court order as provided
             443      in Subsection (7) or a legislative subpoena as provided in Title 36, Chapter 14, Legislative
             444      Subpoena Powers.
             445          (2) (a) Upon request, a governmental entity shall disclose a controlled record to:
             446          (i) a physician, psychologist, certified social worker, insurance provider or agent, or a
             447      government public health agency upon submission of a release from the subject of the record that
             448      is dated no more than 90 days prior to the date the request is made and a signed acknowledgment
             449      of the terms of disclosure of controlled information as provided by Subsection (2)(b); and
             450          (ii) any person to whom the record must be disclosed pursuant to court order as provided
             451      in Subsection (7) or a legislative subpoena as provided in Title 36, Chapter 14.
             452          (b) A person who receives a record from a governmental entity in accordance with
             453      Subsection (2)(a)(i) may not disclose controlled information from that record to any person,
             454      including the subject of the record.
             455          (3) If there is more than one subject of a private or controlled record, the portion of the
             456      record that pertains to another subject shall be segregated from the portion that the requester is
             457      entitled to inspect.
             458          (4) Upon request, a governmental entity shall disclose a protected record to:
             459          (a) the person who submitted the record;


             460          (b) any other individual who:
             461          (i) has a power of attorney from all persons, governmental entities, or political
             462      subdivisions whose interests were sought to be protected by the protected classification; or
             463          (ii) submits a notarized release from all persons, governmental entities, or political
             464      subdivisions whose interests were sought to be protected by the protected classification or from
             465      their legal representatives dated no more than 90 days prior to the date the request is made; or
             466          (c) any person to whom the record must be provided pursuant to a court order as provided
             467      in Subsection (7) or a legislative subpoena as provided in Title 36, Chapter 14.
             468          (5) A governmental entity may disclose a private, controlled, or protected record to another
             469      governmental entity, political subdivision, another state, the United States, or a foreign government
             470      only as provided by Section 63-2-206 .
             471          (6) Before releasing a private, controlled, or protected record, the governmental entity shall
             472      obtain evidence of the requester's identity.
             473          (7) A governmental entity shall disclose a record pursuant to the terms of a court order
             474      signed by a judge from a court of competent jurisdiction, provided that:
             475          (a) the record deals with a matter in controversy over which the court has jurisdiction;
             476          (b) the court has considered the merits of the request for access to the record; and
             477          (c) the court has considered and, where appropriate, limited the requester's use and further
             478      disclosure of the record in order to protect privacy interests in the case of private or controlled
             479      records, business confidentiality interests in the case of records protected under Subsections
             480      63-2-304 (1) and (2), and privacy interests or the public interest in the case of other protected
             481      records;
             482          (d) to the extent the record is properly classified private, controlled, or protected, the
             483      interests favoring access, considering limitations thereon, outweigh the interests favoring
             484      restriction of access; and
             485          (e) where access is restricted by a rule, statute, or regulation referred to in Subsection
             486      63-2-201 (3)(b), the court has authority independent of this chapter to order disclosure.
             487          (8) (a) A governmental entity may disclose or authorize disclosure of private or controlled
             488      records for research purposes if the governmental entity:
             489          (i) determines that the research purpose cannot reasonably be accomplished without use
             490      or disclosure of the information to the researcher in individually identifiable form;


             491          (ii) determines that the proposed research is bona fide, and that the value of the research
             492      outweighs the infringement upon personal privacy;
             493          (iii) requires the researcher to assure the integrity, confidentiality, and security of the
             494      records and requires the removal or destruction of the individual identifiers associated with the
             495      records as soon as the purpose of the research project has been accomplished;
             496          (iv) prohibits the researcher from disclosing the record in individually identifiable form,
             497      except as provided in Subsection (8)(b), or from using the record for purposes other than the
             498      research approved by the governmental entity; [and]
             499          (v) secures from the researcher a written statement of his understanding of and agreement
             500      to the conditions of this subsection and his understanding that violation of the terms of this
             501      subsection may subject him to criminal prosecution under Section 63-2-801 [.]; and
             502          (vi) requires that the researcher complies with the provisions of Title 26, Chapter 44,
             503      Genetic Testing Privacy Act, if the research involves genetic information.
             504          (b) A researcher may disclose a record in individually identifiable form if the record is
             505      disclosed for the purpose of auditing or evaluating the research program and no subsequent use or
             506      disclosure of the record in individually identifiable form will be made by the auditor or evaluator
             507      except as provided by this section.
             508          (c) A governmental entity may require indemnification as a condition of permitting
             509      research under this subsection.
             510          (9) (a) Under Subsections 63-2-201 (5)(b) and 63-2-401 (6) a governmental entity may
             511      disclose records that are private under Section 63-2-302 , or protected under Section 63-2-304 to
             512      persons other than those specified in this section.
             513          (b) Under Subsection 63-2-403 (11)(b) the Records Committee may require the disclosure
             514      of records that are private under Section 63-2-302 , controlled under Section 63-2-303 , or protected
             515      under Section 63-2-304 to persons other than those specified in this section.
             516          (c) Under Subsection 63-2-404 (8) the court may require the disclosure of records that are
             517      private under Section 63-2-302 , controlled under Section 63-2-303 , or protected under Section
             518      63-2-304 to persons other than those specified in this section.
             519          Section 17. Section 63-2-302 is amended to read:
             520           63-2-302. Private records.
             521          (1) The following records are private:


             522          (a) records concerning an individual's eligibility for unemployment insurance benefits,
             523      social services, welfare benefits, or the determination of benefit levels;
             524          (b) records containing data on individuals describing medical history, diagnosis, condition,
             525      treatment, evaluation, private genetic information, as defined in Section 26-44-102 , or similar
             526      medical data;
             527          (c) records of publicly funded libraries that when examined alone or with other records
             528      identify a patron;
             529          (d) records received or generated for a Senate or House Ethics Committee concerning any
             530      alleged violation of the rules on legislative ethics, prior to the meeting, and after the meeting, if
             531      the ethics committee meeting was closed to the public;
             532          (e) records received or generated for a Senate confirmation committee concerning
             533      character, professional competence, or physical or mental health of an individual:
             534          (i) if prior to the meeting, the chair of the committee determines release of the records:
             535          (A) reasonably could be expected to interfere with the investigation undertaken by the
             536      committee; or
             537          (B) would create a danger of depriving a person of a right to a fair proceeding or impartial
             538      hearing;
             539          (ii) after the meeting, if the meeting was closed to the public;
             540          (f) records concerning a current or former employee of, or applicant for employment with,
             541      a governmental entity that would disclose that individual's home address, home telephone number,
             542      social security number, insurance coverage, marital status, or payroll deductions; and
             543          (g) that part of a record indicating a person's social security number if provided under
             544      Section 31A-23-202 , 31A-26-202 , 58-1-301 , 61-1-4 , or 61-2-6 .
             545          (2) The following records are private if properly classified by a governmental entity:
             546          (a) records concerning a current or former employee of, or applicant for employment with
             547      a governmental entity, including performance evaluations and personal status information such as
             548      race, religion, or disabilities, but not including records that are public under Subsection
             549      63-2-301 (1)(b) or 63-2-301 (2)(o), or private under Subsection 63-2-302 (1)(b);
             550          (b) records describing an individual's finances, except that the following are public:
             551          (i) records described in Subsection 63-2-301 (1);
             552          (ii) information provided to the governmental entity for the purpose of complying with a


             553      financial assurance requirement; or
             554          (iii) records that must be disclosed in accordance with another statute;
             555          (c) records of independent state agencies if the disclosure of those records would conflict
             556      with the fiduciary obligations of the agency;
             557          (d) other records containing data on individuals the disclosure of which constitutes a
             558      clearly unwarranted invasion of personal privacy; and
             559          (e) records provided by the United States or by a government entity outside the state that
             560      are given with the requirement that the records be managed as private records, if the providing
             561      entity states in writing that the record would not be subject to public disclosure if retained by it.
             562          (3) (a) As used in this Subsection (3), "medical records" means medical reports, records,
             563      statements, history, diagnosis, condition, treatment, and evaluation.
             564          (b) Medical records in the possession of the University of Utah Hospital, its clinics,
             565      doctors, or affiliated entities are not private records or controlled records under Section 63-2-303
             566      when the records are sought:
             567          (i) in connection with any legal or administrative proceeding in which the patient's
             568      physical, mental, or emotional condition is an element of any claim or defense; or
             569          (ii) after a patient's death, in any legal or administrative proceeding in which any party
             570      relies upon the condition as an element of the claim or defense.
             571          (c) Medical records are subject to production in a legal or administrative proceeding
             572      according to state or federal statutes or rules of procedure and evidence as if the medical records
             573      were in the possession of a nongovernmental medical care provider.
             574          Section 18. Effective date.
             575          This act takes effect on July 1, 1999.


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