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