S.F. 2068 Section 1. Section 729.6, subsection 1, Code 2009, is 1 amended by adding the following new paragraph: 2 NEW PARAGRAPH . bb. “Genetic information” means information 3 about genes, gene products, or inherited characteristics that 4 may derive from an individual or an individual’s family member. 5 Sec. 2. Section 729.6, subsection 1, paragraph c, Code 2009, 6 is amended by striking the paragraph and inserting in lieu 7 thereof the following: 8 c. “Genetic testing” means the analysis of an individual’s 9 deoxyribonucleic acid, ribonucleic acid, chromosomes, 10 proteins, and certain metabolites in order to detect heritable 11 disease-related genotypes, mutations, phenotypes, or karyotypes 12 for clinical purposes, including predicting risk of disease, 13 identifying carriers, and establishing prenatal and clinical 14 diagnosis or prognosis. “Genetic testing” includes prenatal, 15 newborn, and carrier screening, and testing in high-risk 16 families if a parent or guardian approves a release for such 17 screening or testing. “Genetic testing” includes tests for 18 metabolites if the tests are undertaken with high probability 19 that an excess of deficiency of the metabolite indicates the 20 presence of heritable mutations in single genes. “Genetic 21 testing” does not mean routine physical measurement, a routine 22 chemical, blood, or urine analysis, or a test for drugs or for 23 human immunodeficiency virus infections. 24 Sec. 3. Section 729.6, Code 2009, is amended by adding the 25 following new subsections: 26 NEW SUBSECTION . 2A. a. A person shall not obtain genetic 27 information or samples for genetic testing from an individual 28 without first obtaining informed and written consent from the 29 individual or the individual’s authorized representative. 30 b. A person shall not perform genetic testing of an 31 individual or collect, retain, transmit, or use genetic 32 information without the informed and written consent of the 33 individual or the individual’s authorized representative. 34 c. The following exceptions apply to the prohibitions in 35 -1- LSB 5674XS (3) 83 av/nh 1/ 4

S.F. 2068 paragraphs “a” and “b” : 1 (1) To the extent that genetic information or the results 2 of genetic testing may be collected, retained, transmitted, 3 or used without the individual’s written and informed consent 4 pursuant to federal or other state law. 5 (2) To identify an individual in the course of a criminal 6 investigation by a law enforcement agency. 7 (3) To identify deceased individuals. 8 (4) To establish parental identity. 9 (5) To screen newborns. 10 (6) By medical repositories or registries. 11 (7) For the purposes of medical or scientific research and 12 education. 13 NEW SUBSECTION . 2B. a. (1) An insurance administrator, 14 health plan, or health insurer shall not release genetic 15 information pertaining to an individual without prior written 16 authorization of the individual. Written authorization shall 17 be required for each disclosure and shall include the person to 18 whom the disclosure is being made. 19 (2) The following exceptions apply to the requirement in 20 subparagraph (1): 21 (a) Individuals participating in research settings, 22 including individuals governed by the federal policy for the 23 protection of human research subjects. 24 (b) Tests conducted purely for research, tests for somatic 25 as opposed to heritable mutations, and testing for forensic 26 purposes. 27 (c) Newborn screening. 28 (d) Paternity testing. 29 (e) Criminal investigations. 30 b. (1) An insurer shall not discriminate against an 31 individual or a member of the individual’s family on the basis 32 of genetic information or genetic testing. 33 (2) This section shall not require a health insurer to 34 provide particular benefits other than those provided under 35 -2- LSB 5674XS (3) 83 av/nh 2/ 4

S.F. 2068 the terms of the insurer’s plan or coverage. A health insurer 1 shall not consider a genetic propensity, susceptibility, or 2 carrier status as a preexisting condition for the purpose 3 of limiting or excluding benefits, establishing rates, or 4 providing coverage. 5 (3) An insurer shall not use genetic information or genetic 6 testing for underwriting health insurance in the individual and 7 group markets. 8 Sec. 4. Section 729.6, subsection 6, Code 2009, is amended 9 to read as follows: 10 6. This section may be enforced through a civil action. 11 a. A person who violates this section or who aids in 12 the violation of this section is liable to an aggrieved 13 insured, employee, labor organization member, or licensee, or 14 aggrieved prospective insured, employee, member, or licensee, 15 for affirmative relief including reinstatement or hiring, 16 with or without back pay, membership, licensing, or any other 17 equitable relief as the court deems appropriate including 18 attorney fees and court costs. 19 b. If a person commits, is committing, or proposes to 20 commit, an act in violation of this section, an injunction may 21 be granted through an action in district court to prohibit the 22 person from continuing such acts. The action for injunctive 23 relief may be brought by an aggrieved insured, employee, labor 24 organization member, or licensee, or aggrieved prospective 25 insured, employee, member, or licensee, the county attorney, 26 or the attorney general. 27 c. A person who in good faith brings an action under 28 this subsection alleging that an employer, employment agency, 29 labor organization, insurance administrator, health plan, 30 health insurer, or licensing agency has required or requested 31 a genetic test in violation of this section , obtained genetic 32 information or samples for genetic testing in violation of this 33 section, performed genetic testing or collected, retained, 34 transmitted, or used genetic information in violation of this 35 -3- LSB 5674XS (3) 83 av/nh 3/ 4

S.F. 2068 section, or released genetic information in violation of this 1 section, shall establish that sufficient evidence exists upon 2 which a reasonable person could find that a violation has 3 occurred. Upon proof that sufficient evidence exists upon 4 which a finding could be made that a violation has occurred as 5 required under this paragraph, the employer, employment agency, 6 labor organization, insurance administrator, health plan, 7 health insurer, or licensing agency has the burden of proving 8 that the requirements of this section were met. 9 EXPLANATION 10 This bill amends Code section 729.6 concerning genetic 11 testing by adding a definition of “genetic information” and 12 revising the definition of what constitutes “genetic testing”. 13 New Code section 729.6(2A) prohibits a person from obtaining 14 genetic information or samples for genetic testing from 15 an individual without first obtaining that individual’s 16 informed and written consent. Exceptions to the consent 17 requirement are where federal or other state law provides 18 otherwise; to identify an individual in the course of a 19 criminal investigation by a law enforcement agency; to identify 20 deceased individuals; to establish parental identity; to screen 21 newborns; for medical repositories or registries; and for the 22 purposes of medical or scientific research and education. 23 New Code section 729.6(2B) prohibits insurance 24 administrators, health plans, and health insurers from 25 releasing genetic information without prior written 26 authorization or discriminating against an individual or a 27 member of an individual’s family on the basis of genetic 28 information or genetic testing. 29 The provisions of the bill are enforceable through a civil 30 action brought by an aggrieved individual. Such an individual 31 may seek equitable and injunctive relief as well as attorney 32 fees and costs. 33 -4- LSB 5674XS (3) 83 av/nh 4/ 4