House File 214 - Introduced HOUSE FILE BY JOCHUM Passed House, Date Passed Senate, Date Vote: Ayes Nays Vote: Ayes Nays Approved A BILL FOR 1 An Act relating to genetic testing, by regulating genetic testing 2 and information, prohibiting certain uses by employers, 3 insurers, and others, and providing exceptions and remedies. 4 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA: 5 TLSB 1650HH 81 6 eg/cf/24 PAG LIN 1 1 Section 1. Section 729.6, Code 2005, is amended by 1 2 striking the section and inserting in lieu thereof the 1 3 following: 1 4 729.6 TITLE OF ACT. 1 5 This subchapter shall be known and may be cited as the 1 6 "Genetic Testing Act". 1 7 Sec. 2. NEW SECTION. 729.7 DEFINITIONS. 1 8 As used in this subchapter, unless the context otherwise 1 9 requires: 1 10 1. "Employer" means the same as defined in section 216.2. 1 11 2. "Employment agency" means the same as as defined in 1 12 section 94A.1. 1 13 3. "Genetic information" means information about genes, 1 14 gene product, or inherited characteristics that may derive 1 15 from an individual or an individual's family member. 1 16 4. "Genetic testing" means the analysis of an individual's 1 17 deoxyribonucleic acid, ribonucleic acid, chromosomes, 1 18 proteins, and certain metabolites in order to detect heritable 1 19 disease=related genotypes, mutations, phenotypes, or 1 20 karyotypes for clinical purposes, including predicting risk of 1 21 disease, identifying carriers, and establishing prenatal and 1 22 clinical diagnosis or prognosis. "Genetic testing" includes 1 23 prenatal, newborn, and carrier screening, and testing in high= 1 24 risk families if a parent or guardian approves a release for 1 25 such screening or testing. "Genetic testing" includes tests 1 26 for metabolites if the tests are undertaken with high 1 27 probability that an excess of deficiency of the metabolite 1 28 indicates the presence of heritable mutations in single genes. 1 29 "Genetic testing" does not mean routine physical measurement, 1 30 a routine chemical, blood, or urine analysis, or a test for 1 31 drugs or for human immunodeficiency virus infections. 1 32 5. "Labor organization" means the same as defined in 1 33 section 216.2. 1 34 6. "Licensing agency" means a board, commission, 1 35 committee, council, department, examining board, or officer, 2 1 except a judicial officer, in the state, or in a city, county, 2 2 township, or local government, authorized to grant, deny, 2 3 renew, revoke, suspend, annul, withdraw, or amend a license or 2 4 certificate of registration. 2 5 Sec. 3. NEW SECTION. 729.8 CONSENT FOR GENETIC TESTING 2 6 == EXCEPTIONS. 2 7 1. A person shall not obtain genetic information or 2 8 samples for genetic testing from an individual without first 2 9 obtaining informed and written consent from the individual or 2 10 the individual's authorized representative. 2 11 2. A person shall not perform genetic testing of an 2 12 individual or collect, retain, transmit, or use genetic 2 13 information without the informed and written consent of the 2 14 individual or the individual's authorized representative. 2 15 3. The following exceptions apply to the prohibitions in 2 16 subsections 1 and 2: 2 17 a. To the extent that genetic information or the results 2 18 of genetic testing may be collected, retained, transmitted, or 2 19 used without the individual's written and informed consent 2 20 pursuant to federal or other state law. 2 21 b. To identify an individual in the course of a criminal 2 22 investigation by a law enforcement agency. 2 23 c. To identify deceased individuals. 2 24 d. To establish parental identity. 2 25 e. To screen newborns. 2 26 f. By medical repositories or registries. 2 27 g. For the purposes of medical or scientific research and 2 28 education. 2 29 Sec. 4. NEW SECTION. 729.9 PROHIBITED USE BY INSURER. 2 30 1. a. Insurance administrators, health plans, and health 2 31 insurers shall not release genetic information without prior 2 32 written authorization of the individual. Written 2 33 authorization shall be required for each disclosure and shall 2 34 include the person to whom the disclosure is being made. 2 35 b. The following exceptions apply to the requirement in 3 1 paragraph "a": 3 2 (1) Those participating in research settings, including 3 3 those governed by the federal policy for the protection of 3 4 human research subjects. 3 5 (2) Tests conducted purely for research, tests for somatic 3 6 as opposed to heritable mutations, and testing for forensic 3 7 purposes. 3 8 (3) Newborn screening. 3 9 (4) Paternity testing. 3 10 (5) Criminal investigations. 3 11 2. a. An insurer shall not discriminate against an 3 12 individual or a member of the individual's family on the basis 3 13 of genetic information or genetic testing. 3 14 b. This section does not require a health insurer to 3 15 provide particular benefits other than those provided under 3 16 the terms of the insurer's plan or coverage. A health insurer 3 17 shall not consider a genetic propensity, susceptibility, or 3 18 carrier status as a preexisting condition for the purpose of 3 19 limiting or excluding benefits, establishing rates, or 3 20 providing coverage. 3 21 c. An insurer shall not use genetic information or genetic 3 22 testing for underwriting health insurance in the individual 3 23 and group markets. 3 24 Sec. 5. NEW SECTION. 729.10 PROHIBITED USE BY EMPLOYER. 3 25 Except as otherwise required by federal law, an employer 3 26 shall not do any of the following: 3 27 1. Except as provided in section 729.8 2, directly or 3 28 indirectly acquire or have access to any genetic information 3 29 concerning an employee or applicant for employment, or the 3 30 genetic information of a member of the employee's or 3 31 applicant's family. 3 32 2. Fail or refuse to hire, recruit, or promote an 3 33 individual because of genetic information that is unrelated to 3 34 the individual's ability to perform the duties of a particular 3 35 job or position. 4 1 3. Discharge or otherwise discriminate against an 4 2 individual with respect to compensation or the terms, 4 3 conditions, or privileges of employment, because of genetic 4 4 information that is unrelated to the individual's ability to 4 5 perform the duties of a particular job or position. 4 6 4. Limit, segregate, or classify an employee or applicant 4 7 for employment in a way that deprives or tends to deprive the 4 8 employee or applicant of employment opportunities or otherwise 4 9 adversely affects the status of an employee because of genetic 4 10 information that is unrelated to the employee's ability to 4 11 perform the duties of a particular job or position. 4 12 5. Fail or refuse to hire, recruit, or promote an 4 13 individual on the basis of physical or mental examinations 4 14 that are not directly related to the requirements of a 4 15 particular job or position. 4 16 6. Discharge or take other discriminatory action against 4 17 an individual on the basis of physical or mental examinations 4 18 that are not directly related to the requirements of a 4 19 particular job or position. 4 20 7. Fail or refuse to hire, recruit, or promote an 4 21 individual when adaptive devices or aids may be utilized 4 22 thereby enabling that individual to perform the specific 4 23 requirements of a particular job or position. 4 24 8. Discharge or take other discriminatory action against 4 25 an individual when adaptive devices or aids may be utilized 4 26 thereby enabling the individual to perform the specific 4 27 requirements of a particular job or position. 4 28 9. Require an individual to submit to a genetic test or to 4 29 provide genetic information as a condition of obtaining or 4 30 maintaining employment, or of promotion. 4 31 Sec. 6. NEW SECTION. 729.11 VOLUNTARY GENETIC TESTING. 4 32 1. Section 729.10 does not prohibit the genetic testing of 4 33 an employee who requests a genetic test and provides written 4 34 and informed consent pursuant to section 729.8 for the 4 35 following purposes: 5 1 a. Investigating a workers' compensation claim under 5 2 chapter 85, 85A, 85B, or 86. 5 3 b. Determining the employee's susceptibility or level of 5 4 exposure to potentially toxic chemicals or potentially toxic 5 5 substances in the workplace. However, the employer shall not 5 6 terminate the employee, or take any other action that 5 7 adversely affects any term, condition, or privilege of the 5 8 employee's employment as a result of the genetic test. 5 9 2. An employee may voluntarily provide to an employer 5 10 genetic information that is related to the employee's health 5 11 or safety in the workplace. An employer may use genetic 5 12 information received from an employee under this subsection to 5 13 protect the employee's health or safety. 5 14 Sec. 7. NEW SECTION. 729.12 PROHIBITED USE BY EMPLOYMENT 5 15 AGENCY, LABOR ORGANIZATION, OR LICENSING AGENCY. 5 16 An employment agency, labor organization, or licensing 5 17 agency, or its employees, agents, or members shall not 5 18 directly or indirectly do any of the following: 5 19 1. Solicit, require, or administer a genetic test to a 5 20 person as a condition of preemployment application, labor 5 21 organization membership, or licensure. 5 22 2. Affect the terms, conditions, or privileges of 5 23 preemployment application, labor organization membership, or 5 24 licensure, or terminate the labor organization membership, or 5 25 licensure of any person who obtains a genetic test. 5 26 Sec. 8. NEW SECTION. 729.13 ADDITIONAL PROHIBITIONS. 5 27 1. Except as provided in section 729.11, a person shall 5 28 not sell to or interpret for an employer, employment agency, 5 29 labor organization, or licensing agency, or its employees, 5 30 agents, or members, a genetic test of an employee, labor 5 31 organization member, or licensee, or of a prospective 5 32 employee, member, or licensee. 5 33 2. An agreement between a person and an employer, 5 34 prospective employer, employment agency, labor organization, 5 35 or licensing agency, or its employees, agents, or members 6 1 offering the person employment, labor organization membership, 6 2 licensure, or any pay or benefit in return for taking a 6 3 genetic test is prohibited. 6 4 Sec. 9. NEW SECTION. 729.14 FILING A COMPLAINT == 6 5 DISCRIMINATION. 6 6 An employee, labor organization member, or licensee, or 6 7 prospective employee, member, or licensee who acted in good 6 8 faith shall not be discharged, disciplined, or discriminated 6 9 against in any manner for filing a complaint or testifying in 6 10 any proceeding or action involving a violation of this 6 11 subchapter. An employee, labor organization member, or 6 12 licensee, or prospective employee, member, or licensee who is 6 13 discharged, disciplined, or otherwise discriminated against in 6 14 violation of this section shall be compensated by the 6 15 employer, employment agency, labor organization, or licensing 6 16 agency in the amount of any loss of wages and benefits arising 6 17 out of the discrimination. 6 18 Sec. 10. NEW SECTION. 729.15 CIVIL ACTION. 6 19 1. This subchapter may be enforced through a civil action. 6 20 An individual whose rights under this section have been 6 21 violated may recover damages and be granted equitable relief 6 22 in a civil action according to this subsection. 6 23 a. A person who violates this subchapter or who aids in 6 24 the violation of this subchapter is liable to an aggrieved 6 25 employee, labor organization member, or licensee, or aggrieved 6 26 prospective employee, member, or licensee, for affirmative 6 27 relief including reinstatement or hiring, with or without back 6 28 pay, membership, licensing, or any other equitable relief as 6 29 the court deems appropriate including attorney fees and court 6 30 costs. 6 31 b. If a person commits, is committing, or proposes to 6 32 commit, an act in violation of this subchapter, an injunction 6 33 may be granted through an action in district court to prohibit 6 34 the person from continuing such acts. The action for 6 35 injunctive relief may be brought by an aggrieved employee, 7 1 labor organization member, or licensee, or aggrieved 7 2 prospective employee, member, or licensee, an aggrieved 7 3 insured, the county attorney, or the attorney general. 7 4 A person who in good faith brings an action under this 7 5 subsection alleging that an employer, employment agency, labor 7 6 organization, or licensing agency has required or requested a 7 7 genetic test in violation of this subchapter shall establish 7 8 that sufficient evidence exists upon which a reasonable person 7 9 could find that a violation has occurred. Upon proof that 7 10 sufficient evidence exists upon which a finding could be made 7 11 that a violation has occurred as required under this 7 12 paragraph, the employer, employment agency, labor 7 13 organization, or licensing agency has the burden of proving 7 14 that the requirements of this section were met. 7 15 2. An insurer or employer, employment agency, labor 7 16 organization, or licensing agency who violates the rights of 7 17 an individual under this subchapter shall be liable to the 7 18 individual for all of the following, for each separate 7 19 violation as follows: 7 20 a. Actual damages sustained as a result of the violation. 7 21 b. Statutory or punitive damages according to the 7 22 following: 7 23 (1) One hundred thousand dollars if the violation is the 7 24 result of an intentional and willful act. 7 25 (2) Punitive damages if the violation is the result of a 7 26 malicious act. 7 27 (3) Reasonable attorney fees. 7 28 EXPLANATION 7 29 This bill creates a new subchapter in Code chapter 729, to 7 30 be known as the "Genetic Testing Act". 7 31 The bill defines genetic information and genetic testing. 7 32 The bill also requires informed consent of an individual prior 7 33 to genetic testing or retention of genetic information, and 7 34 written authorization prior to disclosure of genetic 7 35 information. Specific exceptions are granted for 8 1 circumstances such as newborn screening, research, paternity 8 2 testing, criminal investigations, and other exceptions 8 3 recognized under other federal and state laws. 8 4 The bill prohibits discrimination by insurers due to 8 5 genetic information or genetic testing, both against the 8 6 person or any member of the person's family. An insurer is 8 7 not permitted to use genetic information or genetic testing 8 8 for underwriting health insurance in the individual and group 8 9 markets. 8 10 Employers are prohibited from using genetic information or 8 11 genetic testing in employment decisions to avoid hiring, 8 12 recruiting, or promoting persons when the genetic information 8 13 is unrelated to the individual's ability to perform the duties 8 14 of a particular job or position. Discrimination in 8 15 compensation or employment opportunities, or discharging an 8 16 employee due to genetic information, is similarly prohibited. 8 17 An individual may not be required to submit to a genetic test 8 18 as a condition of obtaining employment or promotion. 8 19 Employment agencies, labor organizations, and licensing 8 20 agencies are similarly prohibited from obtaining and using 8 21 genetic testing information to discriminate against a person. 8 22 The bill provides a private cause of action for persons 8 23 whose rights are violated by insurers, employers and others. 8 24 A person may seek injunctive relief actual damages and 8 25 attorney fees. In addition, the person is entitled to 8 26 statutory damages of $100,000 if the violation was an 8 27 intentional and willful act, or is entitled to punitive 8 28 damages if the act was malicious. The bill includes 8 29 provisions of repealed section 729.6. 8 30 LSB 1650HH 81 8 31 eg:nh/cf/24