Text: HF00377 Text: HF00379 Text: HF00300 - HF00399 Text: HF Index Bills and Amendments: General Index Bill History: General Index
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
Text: HF00377 Text: HF00379 Text: HF00300 - HF00399 Text: HF Index Bills and Amendments: General Index Bill History: General Index
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