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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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 Sort descending Primary Link Topic(s) Bill Status Summary
Louisiana Health Insurance Coverage Died

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for a medically necessary drug on the 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. Died.

Louisiana Other Lines of Insurance Nondiscrimination Statute

Prohibits life and long-term care insurers, in determining eligibility for coverage, establishing premiums, limiting coverage, or making any other underwriting decisions from doing the following: (1) taking into consideration the fact that an individual or a family member of the individual participated in genetic research, including any request for or receipt of genetic services or participation by an individual or family member in clinical research that includes genetic services, unless the results of that genetic research are included in the individual's medical record or provided by the individual for consideration by the insurer; or (2) requiring or requesting an individual or a family member of the individual to take a genetic test. Additionally prohibits life and long-term care insurers from canceling or refusing to renew an existing policy based on (1) the fact that an individual or a family member of the individual requested or received genetic services; (2) the fact that an individual or a family member of the individual participated in genetic research, including clinical research that includes genetic services; or (3) purchasing genetic information about an individual without the individual's written consent. Insures may consider genetic information contained in an applicant's medical record if the information is relevant to a potential medical condition that impacts mortality or morbidity, and consideration of the genetic information is based on sound actuarial principles or reasonably expected experience.

Louisiana Privacy, Research Enacted

This bill amends Louisianas genetic nondiscrimination in health insurance law. The definition of genetic information and genetic test is revised. The bill also prohibits health insurers from requesting, requiring or purchasing genetic information; requesting or requiring a genetic testing (with some exceptions); establishing rules for eligibility based on genetic information; adjusting premium or contribution amounts based on genetic information; or imposing a pre-existing condition exclusion based on genetic information. An insurer may request that an individual or a family member undergo a genetic test for research that complies with the Common Rule. Signed by the Governor July 7, 2009.

Louisiana Other Lines of Insurance Nondiscrimination Died

Applies provisions that prohibit the use of genetic testing for health insurance and underwriting purposes to life and long-term care insurance policies. Applies prohibitions for unfair or deceptive acts or practices on the basis of genetic information to life and long-term care insurance policies. Died.

Louisiana 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.

Maine Privacy Enacted

Protects the personal information, including genetic information, pertaining to state employees. Signed by the Governor on June 20, 2019.

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.

Maine Privacy, Research Statute

An individual's health care information, including information about individual cells or their components or genetic information, is confidential. Authorization is required to disclose this information other than to the individual by the health care practitioner or facility with some exceptions. The definition of health care information excludes information that protects the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.

Maine Employment Nondiscrimination Enacted

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information. 6/8/21 Signed by the Governor. Effective 90 days after adjournment (March 30, 2021).

Maine Health Insurance Nondiscrimination Died

In amended version, prohibits pre-existing condition exclusions in individual health plans but removes text referring to genetic information. Allows restricted enrollment in individual health plans during open enrollment periods and special enrollment periods in a manner consistent with federal law. Died.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Research Statute

A carrier that issues individual or group hospital, health or dental insurance and the Dirigo Health Self-administered Plan may not discriminate against an individual or eligible dependent on the basis of genetic information, the refusal to submit to a genetic test, refusal to make available the results of a genetic test, or based on the receipt of a genetic test or genetic counseling. A carrier may request, but not require, that an individual undergo a genetic test if the request is made pursuant to research that complies with the Common Rule and other specified criteria are met. Life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurers or an annuity may not (1) discriminate unfairly, which includes the use of genetic test results in a manner that is not reasonably related to anticipated claims experience, or (2) request, require, purchase or use information obtained from a direct-to-consumer genetic test without consent of the individual tested.

Maine Employment Nondiscrimination, Other Topics, Privacy Died

No member, officer, employee or agent of a municipal housing authority may knowingly divulge or disclose personnel information declared confidential with some specified exceptions. Personal information, including genetic information, is considered confidential. Died.

Maine Privacy Statute

The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

Maine Privacy Died

The department of education, a school administrative unit or a state agency may not collect, store, transmit or process the certain information, including DNA, from a student without the written consent of a parent or guardian of a student or an eligible student unless otherwise required or authorized by statute or rule. Died.

Maine Health Insurance Nondiscrimination Statute

An individual, group and blanket medical insurance contract subject to chapters 33 and 35 of Title 24A (with some exceptions) may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Group medical insurance contracts subject to chapter 35 of Title 24A (with some exceptions) may not establish rules for eligibility of an individual to enroll or require an individual to pay a premium or contribution that is greater than that for a similarly situated individual, based on genetic information.

Maine Privacy Died

Clarifies that certain personal information of municipal employees is confidential and a record or portion of a record containing that information in the possession of a municipal government is not a public record. Personal information includes genetic information. Died.

Maine Employment Nondiscrimination Statute

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information.

Maine Health Insurance Coverage Died

As introduced, a health plan must provide coverage for risk assessment for a BRCA gene mutation and genetic counseling or testing, if necessary. Died.

Maine Employment Nondiscrimination Statute

An employer may not fail or refuse to hire, discharge or otherwise discriminate against an employee or applicant for employment because of the individual's refusal to submit to a genetic test or refusal to provide the results of a genetic test, or based on the receipt of a genetic test or genetic counseling, except when based on a bona fide occupational qualification. The Maine Human Rights Commission has authority to enforce this provision.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

In the absence of a medical diagnosis of a disease, disorder or syndrome related to genetic information, a health insurer, life insurer or long-term care insurer may not cancel, limit or deny coverage or establish differentials in premium rates based on such genetic information. A health insurer, life insurer or long-term care insurer may not request, require, purchase or otherwise solicit genetic information; use genetic test results; or consider an individual's decisions or actions relating to genetic testing in any manner for any insurance purpose. 6/10/2021 Reports Read. On motion by Senator Sanborn of Cumberland the Majority Ought Not to Pass. Report accepted. In concurrence. Placed in Legislative Files. Died.

Maine Privacy Statute

Personal information, including genetic information, pertaining to state employees is confidential and not open to public inspection. An employee may examine records containing personal information when permitted or required by law.

Maine Privacy Died

Establishes annual registration of data brokers. Requires data brokers to develop, implement and maintain a comprehensive information security program to protect personally identifiable information. Personally identifiable information includes genetic identifiers. Ought Not to Pass Pursuant To Joint Rule 310, Jun 2, 2021.

Maine Health Insurance Nondiscrimination, Research Enacted

This bill prohibits carriers of hospital, health or dental insurance from discriminating based on genetic information, refusal to submit to a genetic test or to make available the results of a genetic test, or on the basis that an individual or dependent received a genetic test or genetic counseling. A carrier may request but not require a genetic test pursuant to the Common Rule, or equivalent federal regulations and any applicable state or local laws, rules or regulations for the protection of human subjects in research and in compliance with specified conditions. Other provisions limit the ability of carriers to request, require or purchase a genetic information for certain purposes. Signed by the Governor and Public Law as of June 3, 2009.

Maine Privacy Died

Establishes consumer rights with respect to personal information collected by a business. Personal information includes biometric information. Biometric information is defined to include deoxyribonucleic acid. Died Between Houses, Jun 2, 2021.

Maine Health Insurance Nondiscrimination Enacted

This bill amends current health_insurance_nondiscrimination law by deleting provisions pertaining to pre-existing condition exclusions, including those pertaining to genetic information. The amendments prohibit pre-existing condition exclusions entirely to ensure that consumer protections provided under the Affordable Care Act are codified in state law. 3/19/2019 Signed by the Governor.

Maine Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers from requesting, requiring, purchasing or using information obtained from a direct-to-consumer genetic test without consent of the individual tested. Types of insurance covered under the law would include life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance or an annuity. June 5, 2019 Signed by the Governor. Effective 90 days after adjournment on 6/19/19.

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.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

Maryland Other Topics Died

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

Maryland 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.

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

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

Maryland Privacy Died

A business that owns or licenses computerized data that includes personal information such as genetic information of an individual must conduct a reasonable and prompt investigation upon the breach of the security of a system. Died.

Maryland Other Topics Enacted

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

Maryland Privacy Died

This bill restricts access to, use of and retention of DNA samples and disclosure of DNA test results without consent with some exceptions. The bill also provides personal property rights to DNA samples and DNA test results. The bill requires the health department to develop a uniform written informed consent form. Civil and criminal penalties are set forth, and individuals whose rights are violated may bring civil action. Measure failed.

Maryland Privacy Died

Requires certain businesses, when destroying a customers records that contain personal or private information of the customer, to take specific steps to protect against unauthorized access to or use of the information. Personal information is defined to include an individual's genetic print. 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.

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. Died.

Maryland Other Topics Statute

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information.

Maryland Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing, if certain conditions are met. Died.

Maryland Privacy Died

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information, including biometric information. Biometric information is defined as physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

Maryland Other Topics Died

Amends the state law pertaining to direct and indirect advertisement of or solicitation of business for medical laboratory tests. Died.

Maryland Employment Nondiscrimination Enacted

Prohibits the Washington Suburban Sanitary Commission from discriminating against a person on the basis of genetic information. Requires that contracts entered into by the Commission include a provision stating that contractors will not to discriminate in any manner against an employee or an applicant for employment based on a variety of factors, including genetic information. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

Maryland Coverage and reimbursement, Genetic discrimination Died

Prohibiting carriers that offer life insurance, long-term care insurance, and disability insurance policies or contracts from taking certain action regarding coverage based on whether an applicant or...

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.

Maryland Privacy Died

Amends statute requiring a business that maintains personal information of an individual residing in the State to implement and maintain certain security procedures and practices. The bill adds the following to the definition of personal information: genetic information with respect to an individual, including the genetic sample of an individual; the genetic test of an individual; the genetic test of an individual's family member; the manifestation of a disease or disorder in a family member of an individual; any request for and receipt of genetic counseling, or genetic education; and any information derived from genetic information with respect to an individual. In the Senate - First Reading Finance. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

Maryland Health Insurance Nondiscrimination Statute

Insurers, nonprofit health service plans and health maintenance organizations, may seek verification from health care providers that offer wellness programs about health factors that make it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Health factors are defined to include genetic information.

Maryland Privacy Died

Requires the Motor Vehicle Administration to make available to an applicant for a driver's license, an identification card, or a moped operator's permit the opportunity to upgrade to an enhanced identification document. A person who applies for enhanced identification must provide a biometric identifier, which may include DNA. Died.

Maryland Other Lines of Insurance Nondiscrimination Enacted

This bill prohibits long-term care insurance carriers from requesting or requiring a genetic test to deny or limit coverage or charge a higher rate for the same coverage. These entities may not use the results of a genetic test, genetic information, or a request for genetic services to deny or limit coverage or charge a higher rate for the same coverage except that genetic information or the results of a genetic test may be used for such purposes if based on sound actuarial principles. Approved by the Governor May 22, 2008.

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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. 

  • 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: September 14, 2023