2006 Legislation
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SENATE BILL NO. 1361 – Genetic testing privacy act

SENATE BILL NO. 1361

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S1361.......................................by COMMERCE AND HUMAN RESOURCES
GENETIC TESTING PRIVACY ACT - Adds to existing law relating to genetic
testing privacy to provide a short title; to define terms; to set forth
restrictions regarding genetic testing information applicable to employers
and insurers; to provide for a private right of action; and to provide for
enforcement.
                                                                        
02/08    Senate intro - 1st rdg - to printing
02/09    Rpt prt - to Com/HuRes

Bill Text


                                                                        
                                                                        
  ]]]]              LEGISLATURE OF THE STATE OF IDAHO             ]]]]
 Fifty-eighth Legislature                   Second Regular Session - 2006
                                                                        
                                                                        
                                       IN THE SENATE
                                                                        
                                    SENATE BILL NO. 1361
                                                                        
                         BY COMMERCE AND HUMAN RESOURCES COMMITTEE
                                                                        
  1                                        AN ACT
  2    RELATING TO GENETIC TESTING PRIVACY; AMENDING TITLE 39,  IDAHO  CODE,  BY  THE
  3        ADDITION  OF  A  NEW  CHAPTER 83, TITLE 39, IDAHO CODE, TO PROVIDE A SHORT
  4        TITLE, TO DEFINE TERMS, TO SET FORTH RESTRICTIONS REGARDING GENETIC  TEST-
  5        ING  INFORMATION  APPLICABLE  TO  EMPLOYERS AND INSURERS, TO PROVIDE FOR A
  6        PRIVATE RIGHT OF ACTION AND TO PROVIDE FOR ENFORCEMENT.
                                                                        
  7    Be It Enacted by the Legislature of the State of Idaho:
                                                                        
  8        SECTION 1.  That Title 39, Idaho Code, be, and the same is hereby  amended
  9    by  the addition thereto of a NEW CHAPTER, to be known and designated as Chap-
 10    ter 83, Title 39, Idaho Code, and to read as follows:
                                                                        
 11                                      CHAPTER 83
 12                             GENETIC TESTING PRIVACY ACT
                                                                        
 13        39-8301.  SHORT TITLE. This chapter shall be known and may be cited as the
 14    "Genetic Testing Privacy Act."
                                                                        
 15        39-8302.  DEFINITIONS. As used in this chapter:
 16        (1)  "Blood relative" means a person's biologically related parent, grand-
 17    parent, child, grandchild,  sibling,  uncle,  aunt,  nephew,  niece  or  first
 18    cousin.
 19        (2)  "DNA"  means  deoxyribonucleic acid, ribonucleic acid and chromosomes
 20    which may be analyzed to detect heritable diseases  or  conditions,  including
 21    the  identification of carriers, predicting risk of disease, or establishing a
 22    clinical diagnosis.
 23        (3)  "DNA sample" means any human biological specimen from which  DNA  can
 24    be extracted, or DNA extracted from such specimen.
 25        (4)  "Employer"  means any person, partnership, limited liability company,
 26    association, corporation or nonprofit entity that employs one (1) or more per-
 27    sons, including the legislative, executive and judicial branches of state gov-
 28    ernment; any county, city, or any other political subdivision of the state; or
 29    any other separate unit of state or local government.
 30        (5)  "Genetic analysis" or "genetic test" means the testing or analysis of
 31    an identifiable individual's DNA that results in information that  is  derived
 32    from  the  presence,  absence,  alteration or mutation of an inherited gene or
 33    genes, or the presence or  absence  of  a  specific  DNA  marker  or  markers.
 34    "Genetic analysis" or "genetic test" does not mean:
 35        (a)  A routine physical examination;
 36        (b)  A routine chemical, blood or urine analysis;
 37        (c)  A test to identify the presence of drugs or HIV infection; or
 38        (d)  A  test  performed  due  to  the presence of signs, symptoms or other
 39        manifestations of a disease, illness, impairment or other disorder.
 40        (6)  "Individual" means the person from whose body the DNA  sample  origi-
 41    nated.
                                                                        
                                           2
                                                                        
  1        (7)  "Insurer" means an insurer offering, or a party administering, a ben-
  2    efit plan that provides coverage for medical services and health expenses.
  3        (8)  "Person"  means  any  person,  organization  or entity other than the
  4    individual.
  5        (9)  "Private genetic information" means any information about an  identi-
  6    fiable  individual  that  is derived from the presence, absence, alteration or
  7    mutation of an inherited gene or genes, or the presence or absence of  a  spe-
  8    cific  DNA  marker or markers, and which has been obtained from a genetic test
  9    or analysis of the individual's DNA or from a genetic test or  analysis  of  a
 10    person's  DNA  of  whom  the  individual is a blood relative. "Private genetic
 11    information" does not include information that is derived from:
 12        (a)  A routine physical examination;
 13        (b)  A routine chemical, blood or urine analysis;
 14        (c)  A test to identify the presence of drugs or HIV infection; or
 15        (d)  A test performed due to the presence  of  signs,  symptoms  or  other
 16        manifestations of a disease, illness, impairment or other disorder.
                                                                        
 17        39-8303.  RESTRICTIONS  ON EMPLOYERS. (1) Except as provided in subsection
 18    (2) of this section, an employer shall not, in connection with a hiring,  pro-
 19    motion, retention or other related decision:
 20        (a)  Access  or otherwise take into consideration private genetic informa-
 21        tion about an individual;
 22        (b)  Request or require an individual to consent to a release for the pur-
 23        pose of accessing private genetic information about the individual;
 24        (c)  Request or require an individual or his blood relative to submit to a
 25        genetic test; or
 26        (d)  Inquire into or otherwise take into consideration the  fact  that  an
 27        individual  or  his  blood relative has taken or refused to take a genetic
 28        test.
 29        (2)  (a) Notwithstanding the provisions of subsection (1) of this section,
 30        an employer may seek an order compelling the disclosure of private genetic
 31        information held by an individual or third party  pursuant  to  subsection
 32        (2)(b) of this section in connection with:
 33             (i)   An  employment-related judicial or administrative proceeding in
 34             which the individual has placed his health at issue; or
 35             (ii)  An employment-related decision in which the employer has a rea-
 36             sonable basis to believe that the individual's health condition poses
 37             a real and unjustifiable safety risk requiring the change  or  denial
 38             of an assignment.
 39             (b)  (i)   An  order  compelling  the  disclosure  of private genetic
 40             information pursuant to this subsection (2) may only be entered  upon
 41             a finding that:
 42                  (A)  Other  ways  of  obtaining  the private information are not
 43                  available or would not be effective; and
 44                  (B)  There is a compelling need for the private genetic informa-
 45                  tion which substantially outweighs the  potential  harm  to  the
 46                  privacy interests of the individual.
 47             (ii)  An  order compelling the disclosure of private genetic informa-
 48             tion pursuant to this subsection (2) shall:
 49                  (A)  Limit disclosure to those parts of  the  record  containing
 50                  information essential to fulfill the objective of the order;
 51                  (B)  Limit disclosure to those persons whose need for the infor-
 52                  mation is the basis of the order; and
 53                  (C)  Include  such  other  measures as may be necessary to limit
 54                  disclosure for the protection of the individual.
                                                                        
                                           3
                                                                        
  1        39-8304.  RESTRICTIONS ON INSURERS. (1) Except as provided  in  subsection
  2    (2)  of  this  section,  an insurer shall not, in connection with the offer or
  3    renewal of an insurance product or in the determination of premiums, coverage,
  4    renewal, cancellation or  any  other    underwriting  decision  that  pertains
  5    directly  to  the  individual or any group of which the individual is a member
  6    that purchases insurance jointly:
  7        (a)  Access or otherwise take into consideration private genetic  informa-
  8        tion about an asymptomatic individual;
  9        (b)  Request or require an asymptomatic individual to consent to a release
 10        for  the  purpose of accessing private genetic information about the indi-
 11        vidual;
 12        (c)  Request or require an asymptomatic individual or his  blood  relative
 13        to submit to a genetic test; or
 14        (d)  Inquire  into  or  otherwise take into consideration the fact that an
 15        asymptomatic individual or his blood relative has taken or refused to take
 16        a genetic test.
 17        (2)  An insurer may:
 18        (a)  Request information regarding the necessity of a  genetic  test,  but
 19        not  the results of the test, if a claim for payment for the test has been
 20        made against an individual's plan;
 21        (b)  Request that portion of private genetic information that is necessary
 22        to determine the insurer's obligation to  pay  for  health  care  services
 23        where:
 24             (i)   The  primary basis for rendering such services to an individual
 25             is the result of a genetic test; and
 26             (ii)  A claim for payment for such services has been made against the
 27             individual's plan;
 28        (c)  Store information obtained under this subsection  (2)  only  if  such
 29        storage  is in accordance with the provisions of the health insurance por-
 30        tability and accountability act of 1996; and
 31        (d)  Only use or otherwise disclose the information  obtained  under  this
 32        subsection (2) in connection with a proceeding to determine the obligation
 33        of  an  insurer to pay for a genetic test or health care services provided
 34        that, in accordance with the provisions of the health insurance  portabil-
 35        ity  and accountability act of 1996, the insurer makes a reasonable effort
 36        to limit disclosure to the minimum necessary to carry out the purposes  of
 37        the disclosure.
 38        (3)  (a) An  insurer  may, to the extent permitted under subsection (2) of
 39        this section, seek an order compelling the disclosure of  private  genetic
 40        information held by an individual or third party.
 41        (b)  An  order  authorizing  the disclosure of private genetic information
 42        pursuant to this subsection (3) shall:
 43             (i)   Limit disclosure to those parts of the record containing infor-
 44             mation essential to fulfill the objectives of the order;
 45             (ii)  Limit disclosure to those persons whose need for  the  informa-
 46             tion is the basis for the order; and
 47             (iii) Include  such  other measures as may be necessary to limit dis-
 48             closure for the protection of the individual.
 49        (4)  Nothing in this section may be construed as restricting  the  ability
 50    of  an  insurer  to  use information other than private genetic information to
 51    take into account the health status of an individual, group or  population  in
 52    determining premiums or making other underwriting decisions.
 53        (5)  Nothing  in  this section may be construed as requiring an insurer to
 54    pay for genetic testing.
 55        (6)  Information maintained by an insurer about an individual  under  this
                                                                        
                                           4
                                                                        
  1    section may be redisclosed:
  2        (a)  To protect the interests of the insurer in detecting, prosecuting, or
  3        taking  legal  action against criminal activity, fraud, material misrepre-
  4        sentations and material omissions;
  5        (b)  To enable business decisions to be made about the purchase, transfer,
  6        merger, reinsurance or sale of all or part of the insurer's business; and
  7        (c)  To the director of the department of insurance upon formal request.
                                                                        
  8        39-8305.  PRIVATE RIGHT OF ACTION. (1) An individual  whose  legal  rights
  9    arising  under this chapter have been violated after July 1, 2006, may recover
 10    damages and be granted equitable relief in a civil action.
 11        (2)  Any employer or insurer who violates the legal rights of an  individ-
 12    ual arising from this chapter shall be liable to the individual for each sepa-
 13    rate violation in an amount equal to:
 14        (a)  Actual damages sustained as a result of the violation;
 15        (b)  (i)   One hundred thousand dollars ($100,000) if the violation is the
 16             result of an intentional and willful act; or
 17             (ii)  Punitive  damages if the violation is the result of a malicious
 18             act; and
 19        (c)  Reasonable attorney's fees.
                                                                        
 20        39-8306.  ENFORCEMENT. (1) Whenever the attorney  general  has  reason  to
 21    believe  that  any person is using or is about to use any method, act or prac-
 22    tice in violation of the provisions of  this  chapter,  and  that  proceedings
 23    would  be  in  the  public  interest, the attorney general may bring an action
 24    against the person to restrain or enjoin the use of such method, act or  prac-
 25    tice.
 26        (2)  In  addition  to restraining or enjoining the use of a method, act or
 27    practice, the court may, after July 1, 2006, require the payment of:
 28        (a)  A civil fine of not more than twenty-five thousand dollars  ($25,000)
 29        for each separate intentional violation; and
 30        (b)  Reasonable  costs  of investigation and litigation, including reason-
 31        able attorney's fees.

Statement of Purpose / Fiscal Impact


                       STATEMENT OF PURPOSE

                             RS 15601

*The purpose of this proposed legislation is to ensure the
privacy of genetic testing results. A person wishing to have
testing done to either confirm or deny their predisposition to
any genetic illness should not have the test results used against
them either by employers or insurers.

 



                           FISCAL IMPACT



* There is no fiscal impact to the state general fund or any unit
of local government.



 

Contact
Name: Sen. Joyce Broadsword
Phone: 208-332-1338
Rep. Mary Lou Shepherd



STATEMENT OF PURPOSE/FISCAL NOTE                                 S 1361