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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.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Sort descending Summary
Florida Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill amends Florida's health_insurance_nondiscrimination law. The bill removes the exemption for life, disability and long-term care insurance under existing law and states that the law applies to other lines of insurance. Died.

Iowa Health Insurance Nondiscrimination Died

Establishes the Healthy Iowa program. Residents of the state are entitled to enroll. Discrimination is prohibited with respect to members and providers based on genetic information. Died.

Maryland Health Insurance Nondiscrimination Died

Establishes the Healthy Maryland Program. Requires the Board to establish requirements and standards to consistent with state nondiscrimination laws, including those pertaining to genetic information. Participating providers may not refuse to provide health care services on the basis of genetic information. 3/28/2019 Unfavorable Report by Health and Government Operations. Withdrawn.

Massachusetts Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Measure failed.

Massachusetts Health Insurance Coverage Died

The public employee retirement commission, individual and group accident and sickness insurers, individual or group hospital service plans, individual or group medical service agreements, and individual or group health maintenance contracts must cover colorectal cancer screening as determined medically necessary by a physician. Coverage requirements include KRAS, BRAF, and PIK3CA arrays. 7/18/2018 Accompanied a study order, see H4778.

Mississippi Health Insurance Nondiscrimination, Privacy Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

New Hampshire Privacy Died

Prohibits information or service providers from directly or indirectly transferring, disclosing or otherwise making available to any person or government any personal information, including genetic profiles and DNA/RNA, related to individuals without written consent. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to (1) enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination; and 2) seek, obtain and hold employment without discrimination or abridgement on account of certain characteristics, including genetic information. Also prohibits insurers from refusing to insure or refusing to continue to insure an individual, limit the amount, extent, or kind of coverage available to an individual, or charge an individual a different rate for the same coverage, based on genetic information. School boards also must adopt a policy to establish that the local board of education and school personnel employed by the local board may not discriminate based on genetic information. Charter and nonpublic schools may not discriminate based on genetic information. Died.

Utah Employment Nondiscrimination, Health Insurance Nondiscrimination Died

Removes provisions regulating an employer's and a health insurer's use of personal genetic information. Died.

Wisconsin Employment Nondiscrimination Died

Allows the Department of Workforce Development or an individual who is alleged or was found to have been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court in addition to or in lieu of filing an administrative complaint, with some exceptions. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Connecticut Health Insurance Coverage Died

Requires individual and group health insurers to provide coverage for breast cancer chemoprevention counseling, risk assessment, genetic testing and counseling for any woman who is at increased risk for breast cancer due to family history, prior personal history of breast cancer, positive genetic testing or other indications as determined by a health care provider. Died.

Illinois 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.

Maryland Privacy Died

Sets forth requirements for governmental units, including an executive, legislative or judicial agency, a department, a board, a commission, an authority, a public institution of higher education, or a unit or instrument of the state that collects or discloses personal information. Defines personal information to include an individual's genetic print. Died.

Michigan Employment Nondiscrimination Died

Requires employers of 50 people or more to post a notice that it is illegal under federal law to pay employees different wages for the same work based on certain criteria, including genetic information. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information on students without the express written consent of parents or legal guardians. Biometric information is defined to include a DNA sequence. Died.

New Mexico Employment Nondiscrimination Died

This bill enacts the Uniform Protection of Genetic Information in Employment Act on employee access to genetic information, confidentiality and retention of genetic information and disclosure of genetic information. Measure failed.

New York Privacy Died

Enacts the Personal Information Protection Act. Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security of this information. Personal information includes DNA samples. Died.

South Dakota Health Insurance Nondiscrimination Died

This bill prohibits pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

Washington Privacy Died

Seeks to increase consumer data transparency. The bill address consumer biometric information, which is defined to include DNA. Died.

California Other Topics Died

This bill prohibits the denial of a workers' compensation claim solely because the motivation behind what caused the employee's injury or injury resulting in death was related to an immutable characteristic of the employee. The bill also states that physicians assigning apportionment to the causes of permanent disability by finding what approximate percentage of the disability is a direct result of the employment-related injury versus other factors may not consider genetic predisposition a cause or other factor of disability. Measure failed.

Florida Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits life insurers, long-term care insurers, and disability income insurers from certain actions relating to genetic information or genetic testing of applicants. Prohibits these insurers from taking certain actions relating to coverage or rates unless certain conditions are met. Requires entities providing direct-to-consumer genetic testing to obtain prior written authorization to disclose identifying health information to life or health insurers. Died.

Kentucky Privacy Died

Creates a parent's right to consent in writing before any record of the minor child�s blood or deoxyribonucleic acid is created, stored, or shared, unless authorized pursuant to a court order or an ongoing criminal investigation. Died.

Maryland Other Topics Died

A hospital or related institution may not discriminate in admitting or providing personal care based on genetic information. Died.

California Privacy Died

Language in introduced version, which pertained to genetic characteristics and workers compensation, was stricken. Amended version of bill states that peace officer and custodial officer personnel records maintained by a state or local agency are not confidential and are available for public inspection. Records available for inspection include those relating to an incident in which a sustained finding was made by any law enforcement agency or oversight agency that a peace officer or custodial officer engaged in conduct such as verbal statements, writings, online posts, recordings, and gestures, involving prejudice or discrimination against a person on the basis of various factors, including genetic information. Died.

Georgia Privacy Died

Except as required by the federal Individuals with Disabilities Education Act, specified information, including DNA, may not be collected, entered into any student data base, or maintained as education records by a state agency, local board of education, or school. Died.

Maine Privacy Died

Prohibits the collection, entry into an education database or maintenance of DNA by as education records by the department of education or school administrative unit. Died.

Maryland Other Topics Died

Prohibits a hospital or related institution from discriminating in admitting or providing care for an individual based on various factors, including genetic information. Died.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Mississippi Privacy Died

Creates the parental authority act. Parental rights include the he right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (H) Died In Committee.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New York Health Insurance Coverage Died

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

Oklahoma Employment Nondiscrimination Died

This bill amends statutes pertaining to discriminatory practices in employment, housing, and public accommodations. The bill provides exclusive remedies for individuals alleging discrimination in employment on the basis of genetic information. Measure failed.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

Alabama Privacy Died

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

Delaware Privacy Died

Restricts the use of a child's personally identifiable information, including DNA and other genetic material, by the operator of an internet service. Substitute bill passed by House and Senate, but substitute bill does not include language regarding DNA and genetic information. Substituted bill was signed by the Governor.

Illinois 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.

Maryland Other Lines of Insurance Nondiscrimination Died

For a stop-loss insurance policy or contract issues to a small employer, a medical stop-loss insurer may not increase cost-sharing or decrease coverage for a specific individual within the plan or exclude any employee or dependent base on an actual or expected health-status related factor, including genetic information. Died.

Maryland Other Topics Died

Requires the Maryland Department of Health to do the following: (1) by January 1, 2023, develop gene sequence and customer screening guidelines for gene synthesis providers and manufacturers of gene synthesis equipment that include certain requirements; (2) develop a process to certify that gene synthesis providers and manufacturers of gene synthesis equipment are in compliance with the guidelines requiring, on or after January 1, 2024, the Department to certify certain gene synthesis providers and equipment manufacturers. Gene synthesis provider does not include a research scientist making gene synthesis products for the research scientist's own use or for use by another research scientist. In the House - Withdrawn by Sponsor. Died.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Montana Privacy Died

This bill requires parental consent or consent from a student 18 years or older prior to collecting or recording biometric data, which is defined to include a DNA sequence. Died.

New York Health Insurance Nondiscrimination Died

This bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

Tennessee Privacy Died

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. Died.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

Massachusetts Privacy Died

Specifies when authorization to disclose health care information is required. Health care is defined to include genetic information. As of June 6, 2014, accompanied by a study order (see H4147).

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

New Hampshire Privacy Died

This bill restricts the collection, storage, and sharing of student assessment data by the United States Department of Education and the New Hampshire department of education. Student assessment data includes biometric information, which is defined to include DNA. As of October 30, 2014, Interim Study Report: Not Recommended for Legislation in 2014 (Vote 15-0).

New York Use of Residual Newborn Screening Specimens Died

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

Displaying 201 - 250 of 1160

Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024