§1023. Prohibited discrimination; genetic information; disclosure requirements; definitions

            A. As used in this Section, the following terms shall have the following meanings:

            (1) "Collection" means obtaining a DNA sample or samples.

            (2) "Compulsory disclosure" means any disclosure of genetic information mandated or required by federal or state law in connection with a judicial, legislative, or administrative proceeding.

            (3) "Disclose" means to convey or to provide access to genetic information to a person other than the individual.

            (4) "DNA" means deoxyribonucleic acid including mitochondrial DNA, complementary DNA, as well as any DNA derived from ribonucleic acid (RNA).

            (5) "Family" includes an individual's blood relatives and any legal relatives, including a spouse or adopted child, who may have a material interest in the genetic information of the individual.

            (6) "Genetic analysis" means the process of characterizing genetic information from a human tissue sample.

            (7) "Genetic characteristic" means any gene or chromosome, or alteration thereof, that is scientifically or medically believed to cause a disease, disorder, or syndrome, or to be associated with a statistically significant increased risk of development of a disease, disorder, or syndrome.

            (8)(a) "Genetic information" means all information about genes, gene products, inherited characteristics, or family history/pedigree that is expressed in common language and shall include each of the following:

            (i) An individual's genetic test.

            (ii) The genetic tests of the family members of an individual.

            (iii) The manifestation of a disease or disorder in family members of an individual.

            (iv) With respect to an individual or family member of an individual who is a pregnant woman, genetic information of any fetus or embryo carried by such pregnant woman; and with respect to an individual or family member of an individual utilizing an assisted reproductive technology, genetic information of any embryo legally held by the individual or family member.

            (b) "Genetic information" shall not mean information about the sex or age of any individual.

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

            (10)(a) "Genetic test" means any test for determining the presence or absence of genetic characteristics in an individual, including tests of nucleic acids, such as DNA, RNA, and mitochondrial DNA, chromosomes, or proteins in order to diagnose or identify a genetic characteristic or that detects genotypes, mutation, or chromosomal changes.

            (b) "Genetic test" shall not mean an analysis of proteins or metabolites that either:

            (i) Does not detect genotypes, mutations, or chromosomal changes.

            (ii) Is directly related to a manifested disease, disorder, or pathological condition that could be reasonably detected by a health care professional with appropriate training and expertise in the field of medicine involved.

            (11) "Individual" means the source of a human tissue sample from which a DNA sample is extracted or genetic information is characterized.

            (12) "Individual identifier" means a name, address, social security number, health insurance identification number, or similar information by which the identity of an individual can be determined with reasonable accuracy, either directly or by reference to other available information. Such term does not include characters, numbers, or codes assigned to an individual or a DNA sample that cannot singly be used to identify an individual.

            (13) "Insurer" means any hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, or any other insurance contract of this type, including a group insurance plan, or any policy of group, family group, blanket, or association health and accident insurance, a self-insurance plan, health maintenance organization, and preferred provider organization, including insurance agents and third-party administrators, which delivers or issues for delivery in this state an insurance policy or plan.

            (14) "Person" means all persons other than the individual who is the source of a tissue sample and shall include a family, corporation, partnership, association, joint venture, government, governmental subdivision or agency, and any other legal or commercial entity.

            (15) "Research" means scientific investigation that includes systematic development and testing of hypotheses for the purpose of increasing knowledge.

            (16) "Storage" means retention of a DNA sample or of genetic information for an extended period of time after the initial testing process.

            (17) "Underwriting purposes" means rules for or determination of eligibility, including enrollment and continued eligibility, for benefits under the plan or coverage; the computation of premium or contribution amounts under the plan or coverage; and other activities related to the creation, renewal, or replacement of a contract or policy issued by an insurer.

            B.(1) No insurer shall, on the basis of any genetic information concerning an individual or family member or on the basis of an individual's or family member's request for or receipt of genetic services, or the refusal to submit to a genetic test or make available the results of a genetic test:

            (a) Terminate, restrict, limit, or otherwise apply conditions to the coverage of an individual or family member under the policy or plan, or restrict the sale of the policy or plan to an individual or family member.

            (b) Cancel or refuse to renew the coverage of an individual or family member under the policy or plan.

            (c) Deny coverage or exclude an individual or family member from coverage under the policy or plan.

            (d) Impose a rider that excludes coverage for certain benefits or services under the policy or plan.

            (e) Establish differentials in premium rates or cost sharing for coverage under the policy or plan.

            (f) Otherwise discriminate against an individual or family member in the provision of insurance.

            (2) No insurer shall require an applicant for coverage under the policy or plan, or an individual or family member who is presently covered under a policy or plan, to be the subject of a genetic test or to be subjected to questions relating to genetic information.

            (3) All insurers shall, in the application or enrollment information provided by the insurer concerning a policy or plan, provide an applicant or enrollee with a written statement disclosing the rights of the applicant or enrollee under this Section. Such statement shall be in a form and manner that is noticeable to and understandable by an average applicant or enrollee.

            (4)(a) No insurer shall request, require, or purchase genetic information either:

            (i) Of an individual or family member of an individual for underwriting purposes.

            (ii) With respect to any individual or family member of an individual prior to such individual's enrollment under the plan or coverage in connection with such enrollment.

            (b) If an insurer offering health insurance coverage in the individual or group market obtains genetic information incidental to the requesting, requiring, or purchasing of other information concerning any individual, such request, requirement, or purchase shall not be considered a violation of Item (a)(ii) of this Paragraph if such request, requirement, or purchase is not in violation of Item (a)(i) of this Paragraph.

            (5)(a) No insurer shall request or require that an individual, a family member of such individual, or a group member undergo a genetic test.

            (b) Subparagraph (a) of this Paragraph shall not be construed to limit the authority of a health care professional who is providing health care services to an individual to request that such individual undergo a genetic test.

            (6)(a) No insurer shall establish rules for eligibility, including continued eligibility, of any individual or an individual's family member to enroll or continue enrollment based on genetic information.

            (b) Nothing in Subparagraph (a) of this Paragraph or in Items (4)(a)(i) and (ii) of this Subsection shall be construed to preclude an insurer from establishing rules for eligibility for an individual to enroll in individual health insurance coverage based on the manifestation of a disease or disorder in that individual or in a family member of such individual where such family member is covered under the policy that covers such individual.

            (7)(a) No insurer shall impose any preexisting condition exclusion on the basis of genetic information of an individual, family member of an individual, or group member.

            (b) Nothing in Subparagraph (a) of this Paragraph or in Items (4)(a)(i) and (ii) of this Subsection shall be construed to preclude an insurer offering coverage in the individual market from imposing any preexisting condition exclusion for an individual with respect to health insurance coverage on the basis of a manifestation of a disease or disorder in that individual.

            (8)(a) No insurer shall adjust premium or contribution amounts for an individual or group health plan on the basis of genetic information concerning the individual or a family member of the individual.

            (b) Nothing in Subparagraph (a) of this Paragraph shall be construed to preclude an insurer offering health insurance coverage in the individual market from adjusting premium or contribution amounts for an individual on the basis of a manifestation of a disease or disorder in that individual, or in a family member of such individual where such family member is covered under the policy that covers such individual. In such case, the manifestation of a disease or disorder in one individual cannot also be used as genetic information about other individuals covered under the policy issued to such individual and to further increase premium or contribution amounts.

            (c) Nothing in Subparagraph (a) of this Paragraph shall be construed to preclude an insurer offering health insurance coverage in connection with a group health plan from increasing the premium for an employer based upon the manifestation of a disease or disorder of an individual who is enrolled in the plan. In such case, the manifestation of a disease or disorder in one individual cannot also be used as genetic information about other group members and to further increase the premium for the employer.

            (9)(a) Nothing in Subparagraph (5)(a) of this Subsection shall be construed to preclude an insurer offering health insurance coverage in the individual or group market from obtaining and using the results of a genetic test in making a determination regarding payment, as such term is defined for the purposes of applying the regulations promulgated by the secretary of the United States Department of Health and Human Services under Part C of Title XI of the Social Security Act and Section 264 of the Health Insurance Portability and Accountability Act of 1996, consistent with Paragraphs (6) and (7) of this Subsection.

            (b) For purposes of Subparagraph (a) of this Paragraph, an insurer offering health insurance coverage in the individual or group market may request only the minimum amount of information necessary to accomplish the intended purpose.

            (10) Notwithstanding Subparagraph (5)(a) of this Subsection, an insurer offering health insurance coverage in the individual or group market may request, but not require, that an individual, family member of an individual, or a group member undergo a genetic test if each of the following conditions is met:

            (a) The request is made pursuant to 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) The insurer 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 both that:

            (i) Compliance with the request is voluntary.

            (ii) Noncompliance will have no effect on enrollment status or premium, or contribution amounts.

            (c) No genetic information collected or acquired under this Paragraph shall be used for underwriting purposes.

            (d) The insurer notifies the secretary of the United States Department of Health and Human Services in writing that the issuer is conducting activities pursuant to the exception provided for under this Paragraph, including a description of the activities conducted.

            (e) The insurer complies with such other conditions as the secretary of the United States Department of Health and Human Services may by regulation require for activities conducted under this Paragraph.

            C.(1) No insurer shall obtain genetic information from an insured or enrollee, or from their DNA sample, without first obtaining written informed consent from the insured, enrollee, or their representative.

            (2) To be valid, an authorization for disclosure of genetic information shall:

            (a) Be in writing, signed by the individual and dated on the date of such signature.

            (b) Identify the person permitted to make the disclosure.

            (c) Describe the specific genetic information to be disclosed.

            (d) Identify the person to whom the information is to be disclosed.

            (e) Describe with specificity the purpose for which the disclosure is being made.

            (f) State the date upon which the authorization will expire, which in no event shall be more than sixty days after the date of the authorization.

            (g) Include a statement that the authorization is subject to revocation at any time before the disclosure is actually made or the individual is made aware of the details of the genetic information.

            (h) Include a statement that the authorization shall be invalid if used for any purpose other than the described purpose for which the disclosure is made.

            (3) A copy of the authorization shall be provided to the individual.

            (4) An individual may revoke or amend the authorization, in whole or in part, at any time.

            (5) A general authorization for the release of medical records or medical information shall not be construed as an authorization for disclosure of genetic information. With respect to medical records that contain genetic information, the requirements for disclosure of genetic information under this Section must be complied with.

            (6) Nothing in this Section shall exempt a covered entity from the requirements of the Health Insurance Portability and Accountability Act of 1996 pertaining to the collection, use, or disclosure of genetic information, which for purposes of the Health Insurance Portability and Accountability Act of 1996, is defined as "health information" under 42 U.S.C. 1320d(4)(b) and 1320d-9.

            D. The requirements of this Section shall not apply to the genetic information obtained:

            (1) By a state, parish, municipal, or federal law enforcement agency for the purposes of establishing the identity of a person in the course of a criminal investigation or prosecution.

            (2) To determine paternity.

            (3) To determine the identity of deceased individuals.

            (4) For anonymous research where the identity of the subject will not be released.

            (5) Pursuant to newborn screening requirements established by state or federal law.

            (6) As authorized by federal law for the identification of persons.

            (7) By the Department of Children and Family Services or by a court having juvenile jurisdiction as set forth in Children's Code Article 302 for the purposes of child protection investigations or neglect proceedings.

            (8) For treatment, payment, and healthcare operations by an insurer consistent with the federal Health Insurance Portability and Accountability Act and its related regulations.

            (9) For maintenance of information by an insurer in accordance with record retention requirements.

            E. An insured's or enrollee's genetic information is the property of the insured or enrollee. No person shall retain an insured's or enrollee's genetic information without first obtaining authorization from the insured, enrollee, or their representative, unless retention is:

            (1) For the purposes of a criminal or death investigation or for use of in a criminal or juvenile proceeding.

            (2) To determine paternity.

            F.(1) Any person who through negligence collects, stores, or analyzes a DNA sample in violation of this Section, or discloses genetic information in violation of this Section, shall be liable to the individual for each such violation in an amount equal to:

            (a) Any actual damages sustained as a result of the collection, storage, analysis, or disclosure, or fifty thousand dollars, whichever is greater.

            (b) Treble damages, in any case where such a violation resulted in profit or monetary gain.

            (c) The costs of the action together with reasonable attorney fees as determined by the court, in the case of a successful action to enforce any liability under this Section.

(2) Any person who either:

            (a) Through a request, the use of persuasion, under threat, or with a promise of reward, willfully induces another to collect, store, or analyze a DNA sample in violation of this Section.

            (b) Willfully collects, stores, or analyzes a DNA sample in violation of this Section, or willfully discloses genetic information in violation of this Section, shall be liable to the individual for each such violation in an amount equal to:

            (i) Any actual damages sustained as a result of the collection, analysis, or disclosure, or one hundred thousand dollars, whichever is greater.

            (ii) The costs of the action together with reasonable attorney fees as determined by the court, in the case of a successful action under this Section.

            G. Notwithstanding any provision to the contrary, this Section does not apply to any actions of an insurer or third parties dealing with an insurer taken in the ordinary course of business in connection with the sale, issuance, or administration of a life, disability income, long-term care, or critical illness insurance policy. For the purposes of this Section, "critical illness" insurance policy shall mean health insurance providing a principle sum of benefit following diagnosis of specifically named perils.

            Acts 1997, No. 1418, §1; Acts 2003, No. 129, §1, eff. May 28, 2003; Acts 2004, No. 325, §1, eff. June 18, 2004; Redesignated from R.S. 22:213.7 by Acts 2008, No. 415, §1, eff. Jan. 1, 2009; Acts 2009, No. 419, §1; Acts 2010, No. 919, §1, eff. Jan. 1, 2011; Acts 2016, No. 58, §1.

NOTE: Former R.S. 22:1023 repealed by Acts 2008, No. 504, §2, eff. Jan.1, 2009, and redesignated as R.S. 22:803 by Acts 2008, No. 415, §1, eff. Jan. 1, 2009.