Senate File 2215 - Reprinted SENATE FILE 2215 BY COMMITTEE ON STATE GOVERNMENT (SUCCESSOR TO SF 2068) (As Amended and Passed by the Senate February 16, 2010 ) A BILL FOR An Act relating to the use of genetic information and samples 1 for genetic testing and providing for civil enforcement. 2 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA: 3 SF 2215 (4) 83 av/nh/jh

S.F. 2215 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 or 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- SF 2215 (4) 83 av/nh/jh 1/ 4

S.F. 2215 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) For the purposes of medical or scientific research 11 and education and for the use of medical repositories and 12 registries so long as the information does not contain 13 personally identifiable information of an individual. 14 NEW SUBSECTION . 2B. a. (1) An insurance administrator, 15 health plan, or health insurer shall not release genetic 16 information pertaining to an individual without prior written 17 authorization of the individual. Written authorization shall 18 be required for each disclosure and shall include the person to 19 whom the disclosure is being made. 20 (2) The following exceptions apply to the requirement in 21 subparagraph (1): 22 (a) Individuals participating in research settings, 23 including individuals governed by the federal policy for the 24 protection of human research subjects. 25 (b) Tests conducted purely for research, tests for somatic 26 as opposed to heritable mutations, and testing for forensic 27 purposes. 28 (c) Newborn screening. 29 (d) Paternity testing. 30 (e) Criminal investigations. 31 b. (1) An insurer shall not discriminate against an 32 individual or a member of the individual’s family on the basis 33 of genetic information or genetic testing. 34 (2) This section shall not require a health insurer to 35 -2- SF 2215 (4) 83 av/nh/jh 2/ 4

S.F. 2215 provide particular benefits other than those provided under 1 the terms of the insurer’s plan or coverage. A health insurer 2 shall not consider a genetic propensity, susceptibility, or 3 carrier status as a preexisting condition for the purpose 4 of limiting or excluding benefits, establishing rates, or 5 providing coverage. 6 (3) An insurer shall not use genetic information or genetic 7 testing for underwriting health insurance in the individual and 8 group markets. 9 Sec. 4. Section 729.6, subsection 6, Code 2009, is amended 10 to read as follows: 11 6. This section may be enforced through a civil action. 12 a. A person who violates this section or who aids in 13 the violation of this section is liable to an aggrieved 14 insured, employee, labor organization member, or licensee, or 15 aggrieved prospective insured, employee, member, or licensee, 16 for affirmative relief including reinstatement or hiring, 17 with or without back pay, membership, licensing, or any other 18 equitable relief as the court deems appropriate including 19 attorney fees and court costs. 20 b. If a person commits, is committing, or proposes to 21 commit, an act in violation of this section, an injunction may 22 be granted through an action in district court to prohibit the 23 person from continuing such acts. The action for injunctive 24 relief may be brought by an aggrieved insured, employee, labor 25 organization member, or licensee, or aggrieved prospective 26 insured, employee, member, or licensee, the county attorney, 27 or the attorney general. 28 c. A person who in good faith brings an action under this 29 subsection alleging that an employer, employment agency, labor 30 organization, insurance administrator, health plan, health 31 insurer, or licensing agency has required or requested a 32 genetic test in violation of this section , obtained genetic 33 information or samples for genetic testing in violation of this 34 section, performed genetic testing or collected, retained, 35 -3- SF 2215 (4) 83 av/nh/jh 3/ 4

S.F. 2215 transmitted, or used genetic information in violation of this 1 section, or released genetic information in violation of this 2 section, shall establish that sufficient evidence exists upon 3 which a reasonable person could find that a violation has 4 occurred. Upon proof that sufficient evidence exists upon 5 which a finding could be made that a violation has occurred as 6 required under this paragraph, the employer, employment agency, 7 labor organization, insurance administrator, health plan, 8 health insurer, or licensing agency has the burden of proving 9 that the requirements of this section were met. 10 -4- SF 2215 (4) 83 av/nh/jh 4/ 4