House File 378
HOUSE FILE
BY JOCHUM, REASONER, MURPHY, OLDSON,
WHITEAD, LYKAM, QUIRK, D. OLSON,
MYERS, BUKTA, MASCHER, WHITAKER,
HOGG, GASKILL, BERRY, FREVERT,
WENDT, WINCKLER, LENSING, MILLER,
PETERSEN, THOMAS, DANDEKAR, and
FOEGE
Passed House, Date Passed Senate, Date
Vote: Ayes Nays Vote: Ayes Nays
Approved
A BILL FOR
1 An Act relating to genetic information privacy, including the
2 requirement of informed consent to test and written
3 authorization prior to disclosure, prohibitions on certain
4 uses of genetic information, and creating a private cause of
5 action.
6 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:
7 TLSB 1397HH 80
8 jj/cf/24
PAG LIN
1 1 Section 1. NEW SECTION. 729.7 GENETIC INFORMATION
1 2 PRIVACY == INFORMED CONSENT TO TEST == DISCLOSURE OF
1 3 INFORMATION LIMITED == DISCRIMINATION PROHIBITED.
1 4 1. For purposes of this section, unless the context
1 5 otherwise requires:
1 6 a. "Genetic information" means information about genes,
1 7 gene product, or inherited characteristics that may derive
1 8 from the individual or a family member.
1 9 b. "Genetic testing" means the analysis of an individual's
1 10 deoxyribonucleic acid, ribonucleic acid, chromosomes,
1 11 proteins, and certain metabolites in order to detect heritable
1 12 disease=related genotypes, mutations, phenotypes, or
1 13 karyotypes for clinical purposes, including predicting risk of
1 14 disease, identifying carriers, and establishing prenatal and
1 15 clinical diagnosis or prognosis. "Genetic testing" includes
1 16 prenatal, newborn, and carrier screening, and testing in high=
1 17 risk families if a parent or guardian approves a release for
1 18 such screening or testing. "Genetic testing" includes tests
1 19 for metabolites if the tests are undertaken with high
1 20 probability that an excess of deficiency of the metabolite
1 21 indicates the presence of heritable mutations in single genes.
1 22 "Genetic testing" does not mean routine physical measurement,
1 23 a routine chemical, blood, or urine analysis, or a test for
1 24 drugs or for human immunodeficiency virus infections.
1 25 2. a. A person shall not obtain genetic information or
1 26 samples for genetic testing from an individual without first
1 27 obtaining informed and written consent from the individual or
1 28 the individual's authorized representative.
1 29 b. A person shall not perform genetic testing of an
1 30 individual or collect, retain, transmit, or use genetic
1 31 information without the informed and written consent of the
1 32 individual or the individual's authorized representative.
1 33 c. The following exceptions apply to the prohibitions in
1 34 paragraphs "a" and "b":
1 35 (1) To the extent that genetic information or the results
2 1 of genetic testing may be collected, retained, transmitted, or
2 2 used without the individual's written and informed consent
2 3 pursuant to federal or other state law.
2 4 (2) To identify an individual in the course of a criminal
2 5 investigation by a law enforcement agency.
2 6 (3) To identify deceased individuals.
2 7 (4) To establish parental identity.
2 8 (5) To screen newborns.
2 9 (6) By medical repositories or registries.
2 10 (7) For the purposes of medical or scientific research and
2 11 education.
2 12 3. a. Insurance administrators, health plans, and health
2 13 insurers shall not release genetic information without prior
2 14 written authorization of the individual. Written
2 15 authorization shall be required for each disclosure and shall
2 16 include the person to whom the disclosure is being made.
2 17 b. The following exceptions apply to the requirement in
2 18 paragraph "a":
2 19 (1) Those participating in research settings, including
2 20 those governed by the federal policy for the protection of
2 21 human research subjects.
2 22 (2) Tests conducted purely for research, tests for somatic
2 23 as opposed to heritable mutations, and testing for forensic
2 24 purposes.
2 25 (3) Newborn screening.
2 26 (4) Paternity testing.
2 27 (5) Criminal investigations.
2 28 4. a. An insurer shall not discriminate against an
2 29 individual or a member of the individual's family on the basis
2 30 of genetic information or genetic testing.
2 31 b. This section does not require a health insurer to
2 32 provide particular benefits other than those provided under
2 33 the terms of the insurer's plan or coverage. A health insurer
2 34 shall not consider a genetic propensity, susceptibility, or
2 35 carrier status as a preexisting condition for the purpose of
3 1 limiting or excluding benefits, establishing rates, or
3 2 providing coverage.
3 3 c. An insurer shall not use genetic information or genetic
3 4 testing for underwriting health insurance in the individual
3 5 and group markets.
3 6 5. a. Except as otherwise required by federal law, an
3 7 employer shall not do any of the following:
3 8 (1) Fail or refuse to hire, recruit, or promote an
3 9 individual because of genetic information that is unrelated to
3 10 the individual's ability to perform the duties of a particular
3 11 job or position.
3 12 (2) Discharge or otherwise discriminate against an
3 13 individual with respect to compensation or the terms,
3 14 conditions, or privileges of employment, because of genetic
3 15 information that is unrelated to the individual's ability to
3 16 perform the duties of a particular job or position.
3 17 (3) Limit, segregate, or classify an employee or applicant
3 18 for employment in a way that deprives or tends to deprive the
3 19 employee or applicant of employment opportunities or otherwise
3 20 adversely affects the status of an employee because of genetic
3 21 information that is unrelated to the employee's ability to
3 22 perform the duties of a particular job or position.
3 23 (4) Fail or refuse to hire, recruit, or promote an
3 24 individual on the basis of physical or mental examinations
3 25 that are not directly related to the requirements of a
3 26 particular job or position.
3 27 (5) Discharge or take other discriminatory action against
3 28 an individual on the basis of physical or mental examinations
3 29 that are not directly related to the requirements of a
3 30 particular job or position.
3 31 (6) Fail or refuse to hire, recruit, or promote an
3 32 individual when adaptive devices or aids may be utilized
3 33 thereby enabling that individual to perform the specific
3 34 requirements of a particular job or position.
3 35 (7) Discharge or take other discriminatory action against
4 1 an individual when adaptive devices or aids may be utilized
4 2 thereby enabling the individual to perform the specific
4 3 requirements of a particular job or position.
4 4 (8) Require an individual to submit to a genetic test or
4 5 to provide genetic information as a condition of obtaining or
4 6 maintaining employment, or of promotion.
4 7 b. Paragraph "a" does not prohibit the following:
4 8 (1) An employee may voluntarily provide to an employer
4 9 genetic information that is related to the employee's health
4 10 or safety in the workplace.
4 11 (2) An employer may use genetic information received from
4 12 an employee under this subsection to protect the employee's
4 13 health or safety.
4 14 c. Except as provided in subsection 2, an employer shall
4 15 not directly or indirectly acquire or have access to any
4 16 genetic information concerning an employee or applicant for
4 17 employment, or the genetic information of a member of the
4 18 employee's or applicant's family.
4 19 6. a. An individual whose rights under this section have
4 20 been violated may recover damages and be granted equitable
4 21 relief in a civil action according to this subsection.
4 22 b. An insurer or employer who violates the rights of an
4 23 individual under this section shall be liable to the
4 24 individual for all of the following, for each separate
4 25 violation as follows:
4 26 (1) Actual damages sustained as a result of the violation.
4 27 (2) Statutory or punitive damages according to the
4 28 following:
4 29 (a) One hundred thousand dollars if the violation is the
4 30 result of an intentional and willful act.
4 31 (b) Punitive damages if the violation is the result of a
4 32 malicious act.
4 33 (3) Reasonable attorney fees.
4 34 EXPLANATION
4 35 This bill adds a new section to Code chapter 729 regarding
5 1 individual rights. New Code section 729.7 addresses genetic
5 2 information privacy.
5 3 The new Code section defines genetic information and
5 4 genetic testing. The bill also requires informed consent of
5 5 an individual prior to genetic testing or retention of genetic
5 6 information, and written authorization prior to disclosure of
5 7 genetic information. Specific exceptions are granted for
5 8 circumstances such as newborn screening, research, paternity
5 9 testing, criminal investigations, and other exceptions
5 10 recognized under other federal and state laws.
5 11 The bill prohibits discrimination by insurers due to
5 12 genetic information or genetic testing, both against the
5 13 person or any member of the person's family. An insurer is
5 14 not permitted to use genetic information or genetic testing
5 15 for underwriting health insurance in the individual and group
5 16 markets.
5 17 Employers are prohibited from using genetic information or
5 18 genetic testing in employment decisions to avoid hiring,
5 19 recruiting, or promoting persons when the genetic information
5 20 is unrelated to the individual's ability to perform the duties
5 21 of a particular job or position. Discrimination in
5 22 compensation or employment opportunities, or discharging an
5 23 employee due to genetic information, is similarly prohibited.
5 24 An individual may not be required to submit to a genetic test
5 25 as a condition of obtaining employment or promotion.
5 26 The bill provides a private cause of action for persons
5 27 whose rights are violated by insurers or employers. A person
5 28 may seek actual damages and attorney fees. In addition, the
5 29 person is entitled to statutory damages of $100,000 if the
5 30 violation was an intentional and willful act, or is entitled
5 31 to punitive damages if the act was malicious.
5 32 LSB 1397HH 80
5 33 jj/cf/24