Utah Admin. Code R590-146-24 - Prohibition Against Use of Genetic Information and Requests for Genetic Testing

(1) An issuer may not:

(a) deny or condition the issuance or effectiveness of a policy or certificate, including the imposition of an exclusion of benefits under the policy based on a preexisting condition, based on the genetic information of the individual; or

(b) discriminate in the pricing of the policy or certificate, including the adjustment of premium rates, of an individual based on the genetic information of the individual.

(2) Nothing in this section shall be construed to limit the ability of an issuer, to the extent otherwise permitted by law, from:

(a) denying or conditioning the issuance or effectiveness of a policy or certificate or increasing the premium for a group based on the manifestation of a disease or disorder of an insured or applicant; or

(b) increasing the premium for a policy issued to an individual based on the manifestation of a disease or disorder of an individual who is covered under the policy.

(3) An issuer may not request or require an individual or a family member of an individual to undergo a genetic test.

(4) Subsection (3) does not preclude an issuer from obtaining and using the results of a genetic test in making a determination regarding payment if it is consistent with Subsection (1).

(5) For purposes of Subsection (4), an issuer may only request the minimum amount of information necessary to accomplish the intended purpose.

(6) Notwithstanding Subsection (3), an issuer may request, but not require, that an individual or a family member of an individual undergo a genetic test if each condition in this subsection is met:

(a) a request is made for research that complies with Part 46 of Title 45, Code of Federal Regulations, or equivalent federal regulations, and any applicable state or local law or regulations for the protection of human subjects in research;

(b) an issuer clearly indicates to each individual, or in the case of a minor child, to the legal guardian of such child, to whom the request is made that:

(i) compliance with the request is voluntary; and

(ii) non-compliance will have no effect on enrollment status, premium, or contribution amounts;

(c) genetic information collected or acquired is not used for underwriting, determination of eligibility to enroll or maintain enrollment status, premium rates, or the issuance, renewal, or replacement of a policy or certificate;

(d) an issuer notifies the Secretary in writing that the issuer is conducting activities under this exception, including a description of the activities conducted; and

(e) an issuer complies with other conditions as the Secretary may, by regulation, require for activities conducted under this subsection.

(7) An issuer may not request, require, or purchase genetic information for underwriting purposes.

(8) An issuer may not request, require, or purchase genetic information with respect to an individual prior to the individual's enrollment under a policy.

(9) If an issuer obtains genetic information incidental to requesting, requiring, or purchasing of other information concerning an individual, such request, requirement, or purchase may not be considered a violation of Subsection (8) if such request, requirement, or purchase is not in violation of Subsection (7).

(10) For the purposes of this section:

(a) "Family member" means an individual who is a first-degree, second-degree, third-degree, or fourth-degree relative of an individual.

(b) "Genetic information" means information about an individual's genetic tests, the genetic tests of family members of an individual, and the manifestation of a disease or disorder in family members of an individual.

(i) "Genetic information" includes a request for, or receipt of, genetic services, or participation in clinical research that includes genetic services, by an individual or a family member of an individual. Any reference to genetic information concerning an individual or family member of an individual who is a pregnant woman includes genetic information of any fetus carried by a pregnant woman, or with respect to an individual or family member utilizing reproductive technology, includes genetic information of an embryo legally held by an individual or family member.

(ii) "Genetic information" does not include information about the sex or age of an individual.

(c) "Genetic services" means a genetic test, genetic counseling, including obtaining, interpreting, or assessing genetic information, or genetic education.

(d)

(i) "Genetic test" means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detect genotypes, mutations, or chromosomal changes.

(ii) "Genetic test" does not include an analysis of proteins or metabolites that does not detect genotypes, mutations, or chromosomal changes, or an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved.

(e) "Issuer" includes a third-party administrator or other person acting for or on behalf of the issuer.

(f) "Underwriting purposes" means:

(i) rules for, or determination of, eligibility, including enrollment and continued eligibility, for benefits;

(ii) computation of premium or contribution amounts;

(iii) application of a preexisting condition exclusion; and

(iv) any other activity related to the creation, renewal, or replacement of health benefits or an accident and health insurance policy.

Notes

Utah Admin. Code R590-146-24

Amended by Utah State Bulletin Number 2019-13, effective 6/7/2019 Adopted by Utah State Bulletin Number 2024-16, effective 8/7/2024