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 Sort ascending | Summary |
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South Carolina | State StatuteSouth Carolina: SCCL 38-93 et seq. | Health Insurance Nondiscrimination, Privacy | Statute | Health insurers offering individual health plans may not cancel, deny, adjust premiums or rates or impose pre-existing conditions exclusions based on the genetic information of an individual or family member or based on a request for genetic services. Health insurers offering group health plans may not adjust premiums or contributions based on genetic information. Health insurers may not request or require genetic information or require an individual to undergo a genetic test. The law also prohibits disclosure of genetic information without informed written consent, with some exceptions such as for law enforcement purposes or as allowable under state and federal statutes. It is required to obtain informed consent prior to performing a genetic test, with some exceptions such as for diagnosis or treatment of an individual if performed by a clinical laboratory that has received a specimen referral from the individual's treating physician or another clinical laboratory. Penalties for violations of the law are established and are intended to be in addition to those set forth under the Genetic Information Nondiscrimination Act of 2008, Public Law 110-233. |
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. |
Massachusetts | State StatuteMassachusetts: Chapter 405 of the Acts of 2014 | Research | Statute | Any public health surveillance activity which is also research is subject to the requirements for research using human subjects. |
New York | State StatuteNew York: NYCL (ISC) 2615 | Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination | Statute | No insurer may request or require an individual proposed for insurance coverage to submit to a genetic test without prior written informed consent. Further disclosures require additional consent. If an adverse underwriting decision is based on the results of a genetic test, the insurer must notify the individual. No insurer who lawfully possesses information derived from a genetic test on a biological sample may incorporate the information into the record of a non-consenting individual. Penalties for violations are set forth. |
California | State StatuteCalifornia: Cal. Civil Code 56.265 | Other Lines of Insurance Nondiscrimination | Statute | A person who underwrites or sells an annuity contract or contracts insuring, guaranteeing, or indemnifying against loss, harm, damage, illness, disability, or death, and any affiliate of that person or entity, shall not disclose individually identifiable information concerning the medical or genetic history of a customer for use with regard to granting credit. |
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. |
Nebraska | State StatuteNebraska: NRS 71-519 | Use of Residual Newborn Screening Specimens | Statute | The health department must adopt and promulgate rules and regulations relating to the use_of_residual_newborn_screening_specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department. The health department also must develop a pamphlet which explains that residual newborn blood specimens may be used for approved public health research. |
Texas | State StatuteTexas: Health and Safety Code 33.0111 et seq. | Use of Residual Newborn Screening Specimens | Statute | Reports, records, and information obtained by the health department for newborn screening that do not identify a child or the family of a child will not be released for public health research purposes unless a parent, managing conservator, or guardian of the child consents to disclosure. Newborn screening blood spots and associated data are confidential under law and may only be used as specified. If a family consents to disclosure of nonidentifiable reports, records and information for public health research, any subsequent disclosures must be approved by an IRB or privacy board of the health department and the Health Commissioner or his or her designee. research for public health purposes is defined to include purposes that relate to cancer, a birth defect, an infectious disease, a chronic disease, environmental exposure, or newborn screening. |
Vermont | State StatuteVermont: VSA 18 9331 et seq. | Privacy, Research | Statute | A person may not be required to undergo genetic testing with some exceptions. Genetic testing may not be performed on any individual or any bodily materials be released for purposes of genetic testing without prior written authorization and informed consent except for (1) medical research where the identity of the subject is unknown, (2) if the research is conducted with anonymized medical information, where individual identifiers are encrypted or encoded, and the identity of the individual is not disclosed, or (3) if the identity of the individual is known, where standards of protection are equal to those contained in regulations promulgated by the federal Office for Protection from research Risk (OPRR). |
Arizona | State StatuteArizona: ARS 1-602 | Privacy | Statute | Parents must consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as newborn screening. |
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. |
Michigan | State StatuteMichigan: MCL 333.16221, 333.17020, and 333.17520 | Privacy | Statute | A physician or individual to whom a physician has delegated authority must obtain informed written consent to order a pre-symptomatic or predictive genetic test. Required contents of the informed consent form are specified, and the department of community health with others must develop a model consent form, which, if used, bars the test subject from bringing any civil action for damages based on failure to obtain consent. The public health department may investigate activities thought to be in violation of the law and report its findings by to the appropriate disciplinary subcommittee. |
Oklahoma | State StatuteOklahoma: OS 25-2001 | Privacy, Use of Residual Newborn Screening Specimens | Statute | Creates the Parents' Bill of Rights, including the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order. |
California | State StatuteCalifornia: Cal. Insurance Code 10146 et seq. | Other Lines of Insurance Nondiscrimination | Statute | Tests for genetic characteristics may not be required to determine insurability for life and disability income insurance except for policies contingent on review or testing for other diseases and conditions and only with informed consent. Policies may only limit benefits otherwise payable if loss is caused or contributed to by the presence or absence of genetic characteristics if the insurer imposes limitations for other medical conditions that present an increased risk. A life or disability income insurer may not request a genetic test to determine eligibility for hospital, medical or surgical insurance coverage or coverage under a nonprofit hospital service or health care service plan. The statutes set forth civil and criminal penalties for violations. |
Louisiana | State StatuteLouisiana: LRS 23:302, 23:352 and 23:368; LRS 51:2231 et seq. | Employment Nondiscrimination, Research | Statute | An employer, labor organization, or employment agency may not (1) discriminate against any employee based on genetic information, (2) require, collect, purchase, or disclose genetic information or information about a request or receipt of genetic services with respect to an employee, or (3) maintain genetic information or information about a request for or the receipt of genetic services in general personnel files. Exceptions regarding disclosure include disclosure to an occupational or other health researcher if the research complies with Part 46 of Title 45 of the Code of Federal Regulations. Additional prohibitions apply to labor organizations with respect to membership and to employers, labor organizations and employment agencies with respect to training. Employers, employment agencies and labor organizations also may not discriminate because an individual has sickle cell trait. |
New Hampshire | State StatuteNew Hampshire: NHS 132:10-a V. | Privacy | Statute | No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute. |
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. |
Maryland | State StatuteMaryland: Md. Health 17�215 | Other Topics | Statute | A person who directly or indirectly advertises or solicits business for diagnostic laboratory tests or procedures is a covered entity under HIPAA and must make certain disclosures. The law does not apply to germline genetic or genomic testing for the analysis, diagnosis or prediction of human disease. |
New Mexico | State StatuteNew Mexico: NMSA 24-21-1 et seq. | Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research | Statute | The statutes contain provisions on the acquisition, collection, retention, transmission or use of genetic information. Consent requirements provide an exemption (1) if DNA, genetic information or results of genetic analysis are not identified with the person or person's family members or (2) for the purpose of medical or scientific research and education (including retention of gene products, genetic information or genetic analysis if the identity of the person or person's family members is not disclosed.) Discrimination by an insurer against a person or his/her family member based on genetic analysis, genetic information or genetic propensity is prohibited. Life, disability income or long-term care insurance are exempt if use is based on sound actuarial principles or related to actual or reasonably anticipated experience. Upon request a persons genetic information or samples must be promptly destroyed with some exceptions, including if retention is authorized under a research protocol approved by an institution review board pursuant to federal law. It is unlawful for a person to use genetic information in employment or recruiting. A person whose rights under the provisions of the Genetic Information privacy Act have been violated may bring a civil action for damages or other relief. |
Washington | State StatuteWashington: RCW 48.43.012 | Health Insurance Nondiscrimination | Statute | Makes state law consistent with selected federal consumer protections in the patient protection and affordable care act. Prohibits a health carrier or health plan from establishing rules for eligibility based on health-status related factors such as genetic information. |
Arkansas | State StatuteArkansas: Ark. Code 23-66-320 | Health Insurance Nondiscrimination | Statute | Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test. |
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. |
Missouri | State StatuteMissouri: MRS 375.1300 and 375.1303 | Health Insurance Nondiscrimination | Statute | An insurer in making any underwriting decision may not (1) require or request a person or his/her blood relative to provide genetic information or take a genetic test, (2) inquire about a genetic test or what the results of any such test were unless given approval by that person, or (3) consider without the approval of such person the fact that genetic information or a genetic test was taken or refused by a person or blood relative of the person or the results of a test. A violation is an unfair trade practice. The law does not apply to any policy, contract or certificate of life insurance, reinsurance, disability income or long-term care coverage. |
South Carolina | State StatuteSouth Carolina: SCCL 44-37-30 | Use of Residual Newborn Screening Specimens | Statute | Residual newborn screening blood samples may be released for purposes of confidential, anonymous scientific study unless the newborn screening program is otherwise directed. The release of a blood sample must conform with departmental regulations. At the time of testing or at any time after that, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to: (1) return a blood sample in its entirety and any test results not less than two years after the date of testing; (2) destroy a blood sample in not less than two years after the date of the testing; or (3) store a blood sample but not release the blood sample for confidential, anonymous scientific study. A blood sample released for confidential, anonymous study must not contain identifiable information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information. |
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. |
Last updated: September 14, 2023