CHAPTER 38
2001-S 803B
Enacted 6/27/2001


A  N     A   C   T

RELATING TO INSURANCE -- GENETIC TESTING

Introduced By:   Senators Felag, Cicilline, Perry and Walton Date Introduced:   February 27, 2001

It is enacted by the General Assembly as follows:

SECTION 1. Section 27-18-52 of the General Laws in Chapter 27-18 entitled "Accident and Sickness Insurance Policies" is hereby amended to read as follows:

27-18-52. Genetic testing. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state on or after January 1, 1999, which provides health insurance medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies shall:

(b) (1) Use a genetic test or request for genetic tests or the results of a genetic test to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual health insurance policy or, contract, or plan;

(2) Request or require a genetic test for the purpose of determining whether or not to issue or renew an individual's health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of a genetic test without the prior written authorization of the individual from whom the test was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed; or. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure; an exception shall exist for participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule").

(4) Request or require information as to whether an individual has ever had a genetic test, or participated in genetic testing of any kind, whether for clinical or research purposes.

(b) (c) For the purposes of this section, "genetic testing" means a test is the analysis of an individual's DNA, RNA, chromosomes, or proteins for inherited abnormalities or deficiencies, including carrier status, that are linked to physical or mental disorders or impairments, or that indicate the predisposition or susceptibility to illness, disease, impairment, or other disorders, whether physical or mental. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for HIV infection. and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families may be included provided there is an approved release by a parent or guardian. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis or a test for drugs or for HIV infections.

SECTION 2. Chapter 27-18 of the General Laws entitled "Accident and Sickness Insurance Policies" is hereby amended by adding thereto the following section:

27-18-52.1. Genetic information. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka the "Common Rule"). Tests conducted purely for research are excluded from the definition, as are test for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state on or after January 1, 2002, which provides medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies shall:

(b) (1) Use genetic information or request for genetic information or the results of genetic information or other genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy, contract, or plan;

(2) Request or require genetic information for the purpose of determining whether or not to issue or renew an individual's health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of genetic information without the prior written authorization of individual from whom the information was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule");

(4) Request or require information as to whether an individual has genetic information, or participated in genetic information of any kind, whether for clinical or research purposes.

(c) For the purposes of this section, "genetic information" is information about genes, gene product, or inherited characteristics that may derive from the individual or a family member.

SECTION 3. Section 27-19-44 of the General Laws in Chapter 27-19 entitled "Nonprofit Hospital Service Corporation" is hereby amended to read as follows:

27-19-44. Genetic testing. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are test for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No nonprofit health service corporation subject to the provisions of this chapter shall:

(b) (1) Use a genetic test or request for genetic test or the results of a genetic test or other genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy, or contract; ,or plan;

(2) Request or require a genetic test for the purpose of determining whether or not to issue or renew a group, individual health benefits coverage; to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of a genetic test without the prior written authorization of the individual from whom the test was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed; or. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule");

(4) Request or require information as to whether an individual has ever had a genetic test, or participated in genetic testing of any kind, whether for clinical or research purposes.

(c) For the purposes of this section, "genetic testing" is the analysis of an individual's DNA, RNA, chromosomes, or proteins for inherited abnormalities or deficiencies, including carrier status, that are linked to physical or mental disorders or impairments, or that indicate the predisposition of or a susceptibility to illness, disease, impairment, or other disorders, whether physical or mental. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for HIV infection. and certain metabolites in order to detect heritable inheritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes. Such purposes include predicating risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families may be included provided there is an approved release by a parent or guardian. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for HIV infection.

SECTION 4. Chapter 27-19 of the General Laws in Chapter 27-19 entitled "Nonprofit Hospital Service Corporations" is hereby amended by adding thereto the following section:

27-19-44.1. Genetic information. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state on or after January 1, 2002, which provides medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies shall:

(b) (1) Use genetic information or request for genetic information or the results of genetic information or other genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy, contract, or plan;

(2) Request or require genetic information for the purpose of determining whether or not to issue or renew an individual's health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of genetic information without the prior written authorization of the individual from whom the information was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule");

(4) Request or require information as to whether an individual has genetic information, or participated in genetic information of any kind, whether for clinical or research purposes.

(c) For the purposes of this section, "genetic information" is information about genes, gene product, or inherited characteristics that may derive from the individual or a family member.

SECTION 5. Section 27-20-39 of the General Laws in Chapter 27-20 entitled "Nonprofit Medical Service Corporations" is hereby amended to read as follows:

27-20-39. Genetic testing -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No nonprofit health insurer subject to the provisions of this chapter shall:

(b)(1) Use a genetic test or request for genetic or the results of a genetic test to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or individual's health insurance policy, or contract, or plan;

(2) Request or require a genetic test for the purpose of determining whether or not to issue or renew health benefits coverage; ,to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of a genetic test without the prior written authorization of the individual from whom the test was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed; . A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"); or

(4) Request or require information as to whether an individual has ever had a genetic test, or participated in genetic testing of any kind, whether for clinical or research purposes.

(c)(b) For the purposes of this section, "genetic testing" means a test is the analysis of an individual's DNA, RNA, chromosomes or proteins for inherited abnormalities or deficiencies, including carrier status, that are linked to physical or mental disorders or impairments, or that indicate the predisposition of or a susceptibility to illness, disease, impairment, or other disorders, whether physical or mental. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for HIV infection. and certain metabolites in order to detect heritable inheritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families may be included provided there is an approved release by a parent or guardian. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis or a test for drugs or for HIV infections.

SECTION 6. Chapter 27-20 of the General Laws entitled "Nonprofit Medical Service Corporations" is hereby amended by adding thereto the following section:

27-20-39.1. Genetic information. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state on or after January 1, 2002, which provides medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies shall:

(b)(1) Use genetic information or request for genetic information or the results of genetic information or other genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy, contract, or plan;

(2) Request or require genetic information for the purpose of determining whether or not to issue or renew a group or individual's health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of genetic information without the prior written authorization of the individual from whom the information was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed.

A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule");

(4) Request or require information as to whether an individual has genetic information, or participated in genetic information of any kind, whether for clinical or research purposes.

(c) For the purposes of this section, "genetic information" is information about genes, gene product, or inherited characteristics that may derive from the individual or a family member.

SECTION 7. Section 27-41-53 of the General Laws in Chapter 27-41 entitled "Health Maintenance Organizations" is hereby amended to read as follows:

27-41-53. Genetic testing. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No health maintenance organization subject to the provisions of this chapter shall:

(b)(1) Use a genetic test or request for genetic test the results of a genetic test to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy or contract, or plan;

(2) Request or require a genetic test for the purpose of determining whether or not to issue or renew an individual's health benefits coverage; , to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of a genetic test without the prior written authorization of the individual from whom the test was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"); or

(4) Request or require information as to whether an individual has ever had a genetic test, or participated in genetic testing of any kind, whether for clinical or research purposes.

(c)(b) For the purposes of this section, "genetic testing" means a test is the analysis of an individual's DNA, RNA, chromosomes, or protein for inherited abnormalities or deficiencies, including carrier status, that are linked to physical or mental disorders or impairments, or that indicate the predisposition of or a susceptibility to illness, disease, impairment, or other disorders, whether physical or mental. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis, or a test for drugs or for HIV infection. and certain metabolites in order to detect heritable inheritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes. Such purposes include predicting risk of disease, identifying carriers, establishing prenatal and clinical diagnosis or prognosis. Prenatal, newborn and carrier screening, as well as testing in high risk families may be included provided there is an approved release by a parent or guardian. Tests for metabolites are covered only when they are undertaken with high probability that an excess of deficiency of the metabolite indicates the presence of heritable mutations in single genes. "Genetic testing" does not mean routine physical measurement, a routine chemical, blood, or urine analysis or a test for drugs or for HIV infections.

SECTION 8. Chapter 27-41 of the General Laws entitled "Health Maintenance Organizations" is hereby amended by adding thereto the following section:

27-41-53.1. Genetic information. -- (a) Except as provided in chapter 5-37.3, insurance administrators, health plans and providers shall be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization shall be required for each disclosure and include to whom the disclosure is being made. An exception shall exist for those participating in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule"). Tests conducted purely for research are excluded from the definition, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. No individual or group health insurance contract, plan, or policy delivered, issued for delivery, or renewed in this state on or after January 1, 2002, which provides medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage excluding disability income, long term care and insurance supplemental policies which only provide coverage for specified diseases or other supplemental policies shall:

(b) (1) Use genetic information or request for genetic information or the results of genetic information or other genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms or conditions of, or otherwise affect a group or an individual's health insurance policy, contract, or plan;

(2) Request or require genetic information for the purpose of determining whether or not to issue or renew an individual's health benefits coverage, to set reimbursement/co-pay levels or determine covered benefits and services;

(3) Release the results of genetic information without the prior written authorization of the individual from whom the information was obtained, except in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. A recipient of information pursuant to this section may use or disclose such information solely to carry out the purpose for which the information was disclosed. Authorization shall be required for each redisclosure. An exception shall exist for participation in research settings governed by the Federal Policy for the Protection of Human Research Subjects (aka "The Common Rule");

(4) Request or require information as to whether an individual has genetic information, or participated in genetic information of any kind, whether for clinical or research purposes.

(c) For the purposes of this section, "genetic information" is information about genes, gene product, or inherited characteristics that may derive from the individual or a family member.

SECTION 9. This act shall take effect upon passage.


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