SF 2068 (LSB 5674XS (3) 83)

SENATE FILE 2068

BY  JOCHUM

A BILL FOR

An Act relating to the use of genetic information and samples for genetic testing and providing for civil enforcement.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:

    Section 1.  Section 729.6, subsection 1, Code 2009, is amended by adding the following new paragraph:
   NEW PARAGRAPH.  bb.  “Genetic information” means information about genes, gene products, or inherited characteristics that may derive from an individual or an individual’s family member.
    Sec. 2.  Section 729.6, subsection 1, paragraph c, Code 2009, is amended by striking the paragraph and inserting in lieu thereof the following:
   c.  “Genetic testing” means the analysis of an individual’s deoxyribonucleic acid, ribonucleic acid, chromosomes, proteins, and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes, or karyotypes for clinical purposes, including predicting risk of disease, identifying carriers, and establishing prenatal and clinical diagnosis or prognosis. “Genetic testing” includes prenatal, newborn, and carrier screening, and testing in high-risk families if a parent or guardian approves a release for such screening or testing. “Genetic testing” includes tests for metabolites if the tests are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. “Genetic testing” does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for human immunodeficiency virus infections.
    Sec. 3.  Section 729.6, Code 2009, is amended by adding the following new subsections:
   NEW SUBSECTION.  2A.  a.  A person shall not obtain genetic information or samples for genetic testing from an individual without first obtaining informed and written consent from the individual or the individual’s authorized representative.
   b.  A person shall not perform genetic testing of an individual or collect, retain, transmit, or use genetic information without the informed and written consent of the individual or the individual’s authorized representative.
   c.  The following exceptions apply to the prohibitions in paragraphs “a” and “b”:
   (1)  To the extent that genetic information or the results of genetic testing may be collected, retained, transmitted, or used without the individual’s written and informed consent pursuant to federal or other state law.
   (2)  To identify an individual in the course of a criminal investigation by a law enforcement agency.
   (3)  To identify deceased individuals.
   (4)  To establish parental identity.
   (5)  To screen newborns.
   (6)  By medical repositories or registries.
   (7)  For the purposes of medical or scientific research and education.
   NEW SUBSECTION.  2B.  a.  (1)  An insurance administrator, health plan, or health insurer shall not release genetic information pertaining to an individual without prior written authorization of the individual. Written authorization shall be required for each disclosure and shall include the person to whom the disclosure is being made.
   (2)  The following exceptions apply to the requirement in subparagraph (1):
   (a)  Individuals participating in research settings, including individuals governed by the federal policy for the protection of human research subjects.
   (b)  Tests conducted purely for research, tests for somatic as opposed to heritable mutations, and testing for forensic purposes.
   (c)  Newborn screening.
   (d)  Paternity testing.
   (e)  Criminal investigations.
   b.  (1)  An insurer shall not discriminate against an individual or a member of the individual’s family on the basis of genetic information or genetic testing.
   (2)  This section shall not require a health insurer to provide particular benefits other than those provided under the terms of the insurer’s plan or coverage. A health insurer shall not consider a genetic propensity, susceptibility, or carrier status as a preexisting condition for the purpose of limiting or excluding benefits, establishing rates, or providing coverage.
   (3)  An insurer shall not use genetic information or genetic testing for underwriting health insurance in the individual and group markets.
    Sec. 4.  Section 729.6, subsection 6, Code 2009, is amended to read as follows:
   6.  This section may be enforced through a civil action.
   a.  A person who violates this section or who aids in the violation of this section is liable to an aggrieved insured, employee, labor organization member, or licensee, or aggrieved prospective insured, employee, member, or licensee, for affirmative relief including reinstatement or hiring, with or without back pay, membership, licensing, or any other equitable relief as the court deems appropriate including attorney fees and court costs.
   b.  If a person commits, is committing, or proposes to commit, an act in violation of this section, an injunction may be granted through an action in district court to prohibit the person from continuing such acts. The action for injunctive relief may be brought by an aggrieved insured, employee, labor organization member, or licensee, or aggrieved prospective insured, employee, member, or licensee, the county attorney, or the attorney general.
   c.  A person who in good faith brings an action under this subsection alleging that an employer, employment agency, labor organization, insurance administrator, health plan, health insurer, or licensing agency has required or requested a genetic test in violation of this section, obtained genetic information or samples for genetic testing in violation of this section, performed genetic testing or collected, retained, transmitted, or used genetic information in violation of this section, or released genetic information in violation of this section, shall establish that sufficient evidence exists upon which a reasonable person could find that a violation has occurred. Upon proof that sufficient evidence exists upon which a finding could be made that a violation has occurred as required under this paragraph, the employer, employment agency, labor organization, insurance administrator, health plan, health insurer, or licensing agency has the burden of proving that the requirements of this section were met.
EXPLANATION
   This bill amends Code section 729.6 concerning genetic testing by adding a definition of “genetic information” and revising the definition of what constitutes “genetic testing”.
   New Code section 729.6(2A) prohibits a person from obtaining genetic information or samples for genetic testing from an individual without first obtaining that individual’s informed and written consent. Exceptions to the consent requirement are where federal or other state law provides otherwise; to identify an individual in the course of a criminal investigation by a law enforcement agency; to identify deceased individuals; to establish parental identity; to screen newborns; for medical repositories or registries; and for the purposes of medical or scientific research and education.
   New Code section 729.6(2B) prohibits insurance administrators, health plans, and health insurers from releasing genetic information without prior written authorization or discriminating against an individual or a member of an individual’s family on the basis of genetic information or genetic testing.
   The provisions of the bill are enforceable through a civil action brought by an aggrieved individual. Such an individual may seek equitable and injunctive relief as well as attorney fees and costs.