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 | Primary Link | Topic(s) | Bill Status | Summary |
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Connecticut | State StatuteConnecticut CGA 19a 53 | Use of Residual Newborn Screening Specimens | Statute | The Health Commissioner must review and approve research proposals to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals. |
Connecticut | State StatuteConnecticut CGA 38a 503 et seq. | Health Insurance Coverage | Statute | The statute provides coverage of specified services for women who meet the age requirements set forth in the statute. If a woman is believed to be at increased risk for breast cancer due to 1) family history or prior personal history of breast cancer or 2) positive genetic testing or other indications as determined by a woman's physician advanced practice registered nurse, individual and group health insurers must provide a mammogram, which may be provided by breast tomosynthesis at the option of the woman covered under the policy, and comprehensive ultrasound screening of an entire breast or breasts. Ultrasound screening is provided only if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology. |
Connecticut | State StatuteConnecticut: CGA 38 1 et seq. | Other Lines of Insurance Nondiscrimination | Statute | Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record. |
Connecticut | State StatuteConnecticut: CGA 38a 476 and 816 | Health Insurance Nondiscrimination | Statute | Any hospital and medical expense incurred policy, hospital or medical service plan contract and health care center subscriber contract providing individual or group health_insurance_coverage may not refuse to insure, continue to insure, limit coverage, or charge an individual a different rate because of genetic information. In this type of coverage and all health insurance plans pre-existing condition exclusions may not be based on genetic information in the absence of a diagnosis. |
Connecticut | State StatuteConnecticut: CGA 38a 999 | Privacy | Statute | An insurance institution, agent or insurance support organization that collects, uses or discloses medical record information must have written policies, standards and procedures for the management, transfer and security of medical record information, including additional protection against unauthorized disclosure of sensitive health information such as information regarding genetic testing and the fact that an individual has undergone a genetic test. |
Connecticut | State StatuteConnecticut: CGA 46a 60 | Employment Nondiscrimination | Statute | It is a discriminatory practice for an employer, an employment agency, or for any labor organization to request or require genetic information from an employee, a person seeking employment or a member. These entities may not discharge, expel or otherwise discriminate against any person on the basis of genetic information. |
District of Columbia | State StatuteDC Official Code 2-1401.01 et seq. | Employment Nondiscrimination, Health Insurance Nondiscrimination | Statute | Employers, employment agencies and labor organizations may not discriminate based on genetic information with some exceptions such as to investigate a workers' compensation claim. A health benefit plan or health insurer may not establish rules for the eligibility or adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or his/her family member, including information about a request for or receipt of genetic services by an individual or the individual's family member. Health insurers also may not require or request a genetic test. |
Delaware | State StatuteDelaware: Del. Code 16 1201 et seq. | Privacy, Research | Statute | Informed consent is required to obtain or retain genetic information about an individual. Exemptions include anonymous research where the identity of the subject will not be released. A sample from which genetic information has been obtained must be promptly destroyed with certain exceptions, including retention for anonymous research. An individual may inspect, request correction of and obtain genetic information from the records of that individual. The law sets forth civil penalties for violations. |
Delaware | State StatuteDelaware: Del. Code 18 2317 | Health Insurance Nondiscrimination | Statute | Discrimination is prohibited in the issuance, denial or renewal of or in the fixing of the rates, terms or conditions for health insurance, excluding disability or long-term care insurance. The law provides for a cause of action in the nature of defamation, invasion of privacy or negligence with some exceptions. |
Delaware | State StatuteDelaware: Del. Code 18 3571M, 3572, 3602, 3611, and 7202 | Health Insurance Nondiscrimination | Statute | A health status-related factor is defined to include genetic information with respect to large group health plans, individual health plans and small employer health insurance. Group health insurers may not establish rules for eligibility of an individual to enroll based on a health status related factor. Individual health insurers may not establish rules for eligibility of an individual to enroll under the terms of the coverage based on a health status-related factor. |
Delaware | State StatuteDelaware: Del. Code 19 710 et seq. | Employment Nondiscrimination | Statute | Employers, employment agencies, labor organization or joint labor-management committee controlling apprenticeships or other training may not discriminate based on genetic information. These entities may admit or employ any individual on the basis of genetic information in those certain instances where genetic information is a bona fide occupational qualification reasonably necessary to the normal operation of that particular business or enterprise. Enforcement provisions, processes for civil action by the Attorney General or charging party, judicial remedies and civil penalties are established. |
Delaware | State StatuteDelaware: Del. Code 801C | Use of Residual Newborn Screening Specimens | Statute | Prohibits research utilizing stored blood specimens or the stored data without parental consent, except for population-based studies in which all identifying information is removed. Parents may elect not to participate in blood spot storage. |
Florida | State StatuteFlorida FS 1014.01 et seq. | Privacy | Statute | Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. |
Florida | State StatuteFlorida FS 627.4301 et seq. | Other Lines of Insurance Nondiscrimination | Statute | Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose. |
Florida | State StatuteFlorida FS 817.5655 | Privacy, Research | Statute | Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. |
Florida | State StatuteFlorida: FS 448.075 et seq. | Employment Nondiscrimination | Statute | No person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity shall deny or refuse employment to any person or discharge any person from employment solely because such person has the sickle-cell trait. These entities also may not require screening or testing for the sickle-cell trait as a condition for employment. |
Florida | State StatuteFlorida: FS 626.9706 et seq. | Other Lines of Insurance Nondiscrimination | Statute | Insurers may not refuse to issue or deliver any policy of life insurance or disability insurance that affords certain services and benefits or impose a higher premium rate or charge for those policies solely because the person to be insured has the sickle-cell trait. |
Florida | State StatuteFlorida: FS 627.4301, 636.0201, and 641.438 | Health Insurance Nondiscrimination | Statute | Insurers offering health insurance, a self-insured plan, a multiple employer welfare arrangement, a prepaid limited health service organization, a health maintenance organization, a prepaid health clinic, a fraternal benefit society or any health care arrangement where risk is assumed may not cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information in the absence of a diagnosis. Health insurers may not require or solicit genetic information, use genetic test results, or consider a person's decisions or actions relating to genetic testing for any insurance purpose. |
Florida | State StatuteFlorida: FS 627.6561 et seq. | Health Insurance Nondiscrimination | Statute | An insurer that offers a group health insurance policy may not establish rules for eligibility or continued eligibility based on certain health status-related factors, including genetic information or use genetic information in the absence of a diagnosis as the basis for a pre-existing condition exclusion. |
Florida | State StatuteFlorida: FS 641.31071 et seq. | Health Insurance Nondiscrimination | Statute | Health care service programs may not treat genetic information as a preexisting condition in the absence of a diagnosis. A health maintenance organization that offers group health_insurance_coverage may not establish rules for eligibility or continued eligibility of an individual to enroll under the terms of the contract based on certain health status-related factors, including genetic information. |
Florida | State StatuteFlorida: FS 760.40 | Privacy | Statute | Informed consent is required to perform DNA analysis. The results of DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without express consent. A person who performs DNA analysis or receives records, results, or findings of DNA analysis must provide the person tested with notice that the analysis was performed or that the information was received. |
Georgia | State StatuteGeorgia: OCGA 33-54-1 et seq. | Health Insurance Nondiscrimination, Privacy, Research | Statute | Genetic information is the property of the individual tested. Prior written authorization is required for genetic testing and release of results to anyone other than the person tested. A fraternal benefit society, a nonprofit medical service corporation, a health care corporation, a health maintenance corporation, or a self-insured health plan not subject to the exclusive jurisdiction of ERISA may not seek information derived from genetic testing, and if it is received, the information may not be used for any nontherapeutic purpose or be released without explicit written consent. Exceptions include scientific research facilities, which may conduct genetic testing and use information derived from testing for scientific research if the identity of any individual tested is not disclosed to any third party, except to an individual's physician with consent. |
Georgia | State StatuteGeorgia: OCGA 45-18-4.1 | Health Insurance Coverage | Statute | Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. |
Hawaii | State StatuteHawaii: HRS 378-1 et seq. | Employment Nondiscrimination | Statute | Employers may not discriminate against any individual because of being regarded as having an impairment, which includes employer consideration of (1) an individual's genetic information, (2) genetic information of any family member of an individual, or (3) the individual's refusal to submit to a genetic test as a condition of initial or continued employment. The statutes also contain provisions pertaining to employment agencies and labor organizations. |
Hawaii | State StatuteHawaii: HRS 431:10A-118, 431:10A-404.5, 432:1-607, 432:2-404.5, an… | Health Insurance Nondiscrimination, Privacy | Statute | No insurer providing accident and health or sickness insurance coverage or extended health_insurance_coverage, mutual benefit society, fraternal benefit society, or health maintenance organization may use an individual's or a family member's genetic information or a request for genetic services to (1) deny or limit any coverage or (2) establish eligibility, continuation, enrollment, or premium payment. These entities may not request or require collection or disclosure of genetic information of an individual or family member or disclose genetic information without written consent. |
Idaho | State StatuteIdaho: IC 39-8301 et seq. | Employment Nondiscrimination, Privacy | Statute | An employer may not (1) access or otherwise take into account private genetic information, (2) request or require consent to a release of private genetic information, (3) request or require a genetic test, or (4) inquire about taking or refusal to take a genetic test in connection with a hiring, promotion, retention or other related decision. An exception is made under certain circumstances for an order compelling disclosure of private genetic information. |
Idaho | State StatuteIdaho: IC 41-1313 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Statute | With respect to disability insurance or any health benefit plan, no person may discriminate on the basis of a genetic test or private genetic information in the issuance of coverage or the fixing of rates, terms or conditions. |
Idaho | State StatuteIdaho: IC 41-2221, 41-3940, and 41-4708 | Health Insurance Nondiscrimination | Statute | General managed care plans and health benefit plans covering large and small employers may not treat genetic information in the absence of a diagnosis as a pre-existing condition. |
Idaho | State StatuteIdaho: IC 72-438 | Other Topics | Statute | If a firefighter is diagnosed with breast cancer after five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present. |
Illinois | State StatuteIllinois: 215 ILCS 5/356g, 215 ILCS 125/4-6, 305 ILCS 5/5-5 | Health Insurance Coverage | Statute | Individual and group health insurers, health maintenance organizations and the Illinois Department of Healthcare and Family Services (for eligible individuals) must provide coverage for a mammogram and a screening MRI at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. Coverage for a comprehensive ultrasound screening of an entire breast or breasts also is required if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if the woman is at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's health care provider. |
Illinois | State StatuteIllinois: 215 ILCS 5/356v | Health Insurance Nondiscrimination | Statute | An insurer must comply with the provisions of the Genetic Information privacy Act in connection with the amendment, delivery, issuance, or renewal of, or claims for or denial of coverage under, an individual or group policy of accident and health insurance. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis of the condition under the Illinois Health Insurance Portability and Accountability Act. |
Illinois | State StatuteIllinois: 215 ILCS 5/356z.43 | Health Insurance Coverage | Statute | 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. |
Illinois | State StatuteIllinois: 215 ILCS 97/20 and 97/25 | Health Insurance Nondiscrimination | Statute | A group health plan and a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. |
Illinois | State StatuteIllinois: 410 ILCS 513/1 et seq. | Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy | Statute | Genetic information may only be released to the individual tested and to other authorized persons with a few exceptions. An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance, and an insurer that receives this information may not use it for non-therapeutic purposes unless the favorable results of a genetic test are voluntarily submitted. An employer, employment agency, labor organization, and licensing agency must treat genetic testing and genetic information in a manner that is consistent with federal law, including but not limited to the Genetic Information Nondiscrimination Act of 2008. Prohibited actions by employers, employment agencies and labor organizations are specified. No person may disclose the identity of any person upon whom a genetic test is performed or the results of a genetic test in a manner that permits identification of the subject of the test with some exceptions. A company providing direct-to-consumer genetic testing must obtain consent from the individual tested to share genetic information with any health or life insurance company. |
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 | 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. |
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 | State StatuteIowa: IC 514J.101 et seq. | Health Insurance Nondiscrimination | Statute | 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. |
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. |
Kansas | State StatuteKansas: KSA 40-2209, 40-2209p, 40-2257, and 40-2259 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Statute | The statutes restrict the use of genetic tests, information about whether an individual or family member has obtained a genetic test, and test results by a health insurance company, health maintenance organization, nonprofit medical and hospital, dental, optometric or pharmacy corporation, or a group subject to K.S.A. 12-2616 et seq. offering group policies and certificates of coverage or individual policies providing hospital, medical or surgical expense benefits. These entities may not require any individual, as a condition of enrollment or continued enrollment, higher premiums or contributions or than a similarly situated individual based on a genetic test or adjust premium or contribution amounts based on a genetic test. An accident or sickness insurer may not deny coverage based on a health status-related factors, including genetic information, and group policies providing hospital, medical or surgical expense benefits may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. The use of such information by an insurer writing life insurance, disability income insurance or long-term care insurance coverage also is restricted unless it is for the purpose of writing life insurance coverage. Life, disability income or long-term care insurers also may not provide for rates or any other aspect of coverage that is not reasonably related to the risk involved. |
Kansas | State StatuteKansas: KSA 44-1002 and 44-1009 | Employment Nondiscrimination | Statute | An employer may not (1) seek to obtain, obtain or use genetic screening or testing information of an employee or a prospective employee to discriminate against an employee or a prospective employee or (2) subject any employee or prospective employee to any genetic screening or test. |
Kansas | State StatuteKansas: KSA 72-6214 | Privacy | Statute | Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing. |
Kentucky | State StatuteKentucky: KRS 304.12-085 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy | Statute | Individual or group health benefit plan or insurers may not (1) deny, cancel, or refuse to renew the benefits or coverage, or vary the premiums, terms, or conditions for the benefits or coverage, for any participant or beneficiary based on a genetic test for which symptoms have not manifested or a request or receipt of genetic services or (2) disclose any genetic test without prior authorization for each disclosure. A group or individual health benefit plan or insurer or a disability income insurer may not request or require the disclosure of any genetic test about a participant or beneficiary without prior written authorization for each disclosure. |
Kentucky | State StatuteKentucky: KRS 304.17A-200 et seq. | Health Insurance Nondiscrimination | Statute | An insurer that offers health benefit plan coverage in the small group, large group, or association market may not establish rules for eligibility based on health status-related factors, including genetic information. Health insurers offering individual health benefit plan coverage may not impose a pre-existing conditions exclusion based on genetic information in the absence of a diagnosis. |
Kentucky | State StatuteKentucky: KRS 304.17A-259 | Health Insurance Coverage | Statute | Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network. |
Kentucky | State StatuteKentucky: KRS 61.931 et seq. | Privacy | Statute | Public agencies and nonaffiliated third parties must implement, maintain, and update security procedures and practices to safeguard personal information, including a biometric or genetic print. |
Louisiana | State StatuteLouisiana: LRS 22:1023, 40:2210, and 22: 1097 | Health Insurance Nondiscrimination, Privacy, Research | Statute | The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth. |
Louisiana | State StatuteLouisiana: LRS 22:1028.1 | Health Insurance Coverage | Statute | Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations. |
Louisiana | State StatuteLouisiana: LRS 22:1054.1 | Health Insurance Coverage | Statute | Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for the treatment of a metastatic or unresectable tumor with a medically necessary drug on the sole basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. |
Last updated: February 8, 2024