Genome Statute and Legislation Database
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.
State Sort descending | Primary Link | Topic(s) | Bill Status | Summary |
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Illinois | 2019 State Bills Illinois 2019 HB 2189 | Other Lines of Insurance Nondiscrimination | Enacted | A company providing direct-to-consumer commercial genetic testing is prohibited from sharing genetic test information or other personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer. Direct-to-consumer genetic tests are added to the definition of genetic test under the Genetic Information privacy Act. 7/26/2019 Public Act. Effective January 1, 2020. |
Illinois | 2018 State Bills Illinois 2018 SB 2924 | Privacy | Died | Amends the Genetic Information privacy Act provisions concerning uses and disclosures. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died. |
Illinois | 2021 State Bills Illinois 2021 HB 1779 | Health Insurance Coverage | Enacted | An individual or group health care service plan contract that is issued, amended, delivered, or renewed on or after January 1, 2022 may not require prior authorization for biomarker testing for an insured with advanced or metastatic stage 3 or 4 cancer, nor shall prior authorization be required for biomarker testing of cancer progression or recurrence in the insured with advanced or metastatic stage 3 or 4 cancer. Biomarker testing is defined as analysis of tissue blood or fluid specimen for the presence of a biomarker. Biomarker testing includes, but not limited to, single-analyte tests, multiplex tests, and partial or whole genome sequencing. 7/30/21 Governor approved. Effective 1/1/2022. |
Illinois | 2019 State Bills Illinois 2019 SB 1307 | Privacy | Died | Amends the Genetic Information privacy Act provisions concerning uses and disclosures for treatment, payment, health care operations, health oversight activities, and public health activities; uses and disclosures of information to a health information exchange; business associates; and establishment and disclosure of limited data sets and de-identified information. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. Died. |
Illinois | 2021 State Bills Illinois 2021 HB 2109 | Health Insurance Coverage | Enacted | Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden. 8/27/21 Approved by the Governor. Effective 1/1/2022. |
Illinois | 2007 State Bills Illinois 2007 SB 939 | Employment Nondiscrimination, Privacy | Died | This bill amends the Genetic Information privacy Act and makes technical changes to the section of the law pertaining to employers. Measure failed. |
Illinois | 2019 State Bills Illinois 2019 SB 2263 | Privacy | Died | Establishes consumer rights to copies of information held by persons who control and process data. Provides for the correction of inaccurate data. Provides for restrictions on the use of personal data. Defines health care information to include a patient's deoxyribonucleic acid. Died. |
Illinois | 2007 State Bills Illinois 2007 SB 940 | Privacy | Died | This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to firearms. |
Illinois | 2020 State Bills Illinois 2020 HB 4656 | Health Insurance Coverage | Died | Amends the Medical Patient Rights Act. Provides that all persons have a right to request an annual breast cancer screening mammogram under the age of 40 if such person has a family history of breast cancer or genetic testing has confirmed likelihood that such person has otherwise tested positive for BRCA1 or BRCA2 mutations. Died. |
Illinois | 2007 State Bills Illinois 2007 SB 941 | Privacy | Died | This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to cancer drugs. |
Indiana | 2015 State Bills Indiana 2015 SB 323 | Research, Use of Residual Newborn Screening Specimens | Died | Amends the state's newborn screening statute. The bill requires consent to release newborn's residual blood specimen for epidemiological survey and research. Died. |
Indiana | 2018 State Bills Indiana 2018 SB 352 | Privacy | Died | Establishes requirements regarding student education records, personally identifiable information of a student, and certain other information concerning a student. Personally identifiable information includes a DNA sequence. Died. |
Indiana | 2019 State Bills Indiana 2019 HB 1494 | Health Insurance Nondiscrimination | Died | An insurer that issues an individual or group policy of accident and sickness insurance, small employer group health insurance plans, and health maintenance organization contracts may not establish rules for eligibility of an individual to enroll or continued enrollment based on any of the following health status related factors, including genetic information. Died. |
Indiana | State StatuteIndiana: IC 16-41-17-10 | Use of Residual Newborn Screening Specimens | Statute | The state health department must develop a system for using, for epidemiological survey and research purposes, any waste blood specimen left over after newborn screening. Waste blood specimens used for the purpose of epidemiological survey may not include the name or other identifying characteristics that would identify the individual submitting the specimen. |
Indiana | State StatuteIndiana: IC 16-39-5-2 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Statute | An insurer (except a life insurance company) may not obtain genetic screening or testing results without a separate written consent from an individual, but these entities are not liable for inadvertent receipt of results without consent. |
Indiana | 2019 State Bills Indiana 2019 SB 204 | Health Insurance Nondiscrimination | Died | Specifies that a state employee health plan, a policy of accident and sickness insurance, and a health maintenance organization contract must provide for availability, renewability, premium rating, and coverage without regard to health status, including genetic information. Died. |
Indiana | State StatuteIndiana: IC 27-4-1-4 and 27-8-26-1 et seq. | Health Insurance Nondiscrimination | Statute | Every accident and sickness policy, contract through which an HMO furnishes health care, government self-insured health care plan, and employee welfare benefit plan may not (1) require a genetic screening or testing; (2) consider screening or testing information in a manner adverse to member, applicant or their family members; (3) inquire about genetic screening or test results, use or base a decision on such information to cancel, refuse to issue, renew or enter into a contract, limit benefits, or charge higher premiums under health care services coverage; or (4) make an adverse decision about applicants or their family based genetic testing or screening results in medical records or other reports. An insurer may consider voluntarily submitted genetic test results if they are favorable. A violation of the law is an unfair method of competition deceptive act and practice in the business of insurance. |
Indiana | 2019 State Bills Indiana 2019 HB 1631 | Health Insurance Nondiscrimination | Enacted | The provision pertaining to the use of genetic information in short term insurance plans was removed from the final version of this bill. 5/6/2019 Signed by the Governor. |
Iowa | State StatuteIowa: IC 729.6 | Employment Nondiscrimination | Statute | An employer, employment agency, labor organization, licensing agency, or its employees, agents, or members may not solicit, require or administer a genetic test as a condition of employment, application, membership or licensure or affect the terms, conditions, or privileges of employment, application, membership, or licensure, of a person who obtains a genetic test. A person may not sell or interpret genetic tests for the above entities except with informed written consent for the purpose of workers compensation or biomonitoring of workplace toxins. Agreements between parties regarding pay or benefit for taking a genetic test are prohibited. The law may be enforced through civil action. |
Iowa | 2010 State Bills Iowa 2010 SF 2215 | Health Insurance Nondiscrimination, Privacy, Research | Enacted | This bill prohibits health insurers from discriminating based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. Signed by the Governor April 23, 2010. |
Iowa | 2019 State Bills Iowa 2019 HSB 14 | Privacy | Died | This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died. |
Iowa | State StatuteIowa: IC 507B.4, 513B.9A and 513B.10 | Health Insurance Nondiscrimination, Privacy, Research | Statute | Health insurers may not discriminate based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. A carrier or organized delivery system offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based on a health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. |
Iowa | 2011 State Bills Iowa 2011 HF 597 | Employment Nondiscrimination | Enacted | This bill requires a health carrier to notify a covered person of the right to request an external review and include appropriate statements and information in the written notice of a final adverse decision. Health carriers also must include with the notice an authorization form or other document developed by the state that complies with the federal Genetic Information Nondiscrimination Act. Signed by the Governor on April 28, 2011. |
Iowa | 2019 State Bills Iowa 2019 SSB 1071 | Privacy | Died | This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died. |
Iowa | 2021 State Bills Iowa 2021 HF 55 | Health Insurance Nondiscrimination | Pending | A participating healthcare provider or participating care coordinators may not refuse to provide health care services to a member of the Health Iowa Program on the basis of various characteristics, including genetic information. The board for the Health Iowa Program must adopt rules to promote nondiscrimination with respect to members and health care providers on the basis of various factors, including genetic information. Carries over to 2022 session. |
Last updated: September 14, 2023