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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 Summary Sort descending
Minnesota 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.

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.

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.

Washington 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.

Washington 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.

New York Employment Nondiscrimination Died

Establishes unlawful discriminatory practices relating to models, including discrimination based on predisposing genetic characteristics. Died.

Maryland Health Insurance Nondiscrimination Died

Establishing Healthy Maryland as a public corporation and a unit of State government to provide comprehensive universal health coverage for every Maryland resident. The Health Maryland Board must develop rules to promote nondiscrimination with respect to genetic information among members and providers. Died.

Maryland Health Insurance Nondiscrimination Died

Establishing Healthy Maryland as a public corporation and a unit of State government to provide comprehensive universal health coverage for every Maryland resident. The Health Maryland Board must develop rules to promote nondiscrimination with respect to genetic information among members and providers. Died.

Indiana 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.

Rhode Island Health Insurance Coverage Statute

Every individual or group hospital or medical insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state shall pay for two (2) screening mammograms per year when recommended by a physician for women who have been treated for breast cancer within the last five (5) years or are at high risk of developing breast cancer due to genetic predisposition (BRCA gene mutation or multiple first degree relatives) or high risk lesion on prior biopsy (lobular carcinoma in situ) or atypical ductal hyperplasia.

South Dakota Health Insurance Coverage Died

Every policy of group or individual health insurance, each service or indemnity-type contract issued by a nonprofit medical or surgical service plan corporation and each health maintenance contract that covers a female, that is delivered, issued for delivery, or renewed in South Dakota, and that provides coverage for occult breast cancer screening must provide additional benefits for (1) comprehensive ultrasound screening 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 a woman is believed to be at an 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 physician or advanced practice registered nurse; and (2) magnetic resonance imaging in accordance with guidelines established by the American Cancer Society or the American College of Radiology or if a woman is believed to be at an 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 physician or advanced practice registered nurse. Died.

New York Health Insurance Coverage Died

Every policy that provides medical coverage, including coverage for physician services in a physician's office, and every policy that provides major medical or similar comprehensive coverage must cover the cost of genetic testing and any subsequent treatment resulting from the results of the genetic test for people who are, in the opinion of a physician, at significant risk of contracting cancer. 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.

Alaska Privacy Died

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. Died.

Alaska Privacy Died

Excludes DNA samples collected in the course of the person's business of determining genetic genealogy from the state genetic privacy law. Died.

New Jersey Privacy Died

Exempts certain health information, including genetic information, contained in 9-1-1 calls from definition of government record. Died.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Enacted

Existing law prohibits health carriers, in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision from, in connection with the offer, sale, or renewal of insurance: (1) requiring or requesting an individual or a blood relative of the individual to take a genetic test; or (2) taking into consideration the fact that a genetic test was refused by an individual or a blood relative of the individual. Amends existing law by adding life insurers and long-term care insurers to covered entities. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted. 3/29/2021 Signed by the Governor. Effective 1/1/2022.

South Carolina Health Insurance Coverage Died

Existing law requires individual and group health insurers to cover mammograms. This bill requires that Coverage for mammograms required in subsection (A)(1) must include benefits for comprehensive ultrasound screening of an entire breast or breasts if a mammogram demonstrates heterogeneous or dense breast tissue based on: (a) the Breast Imaging Reporting and Data System established by the American College of Radiology; or (b) if a woman is believed to be 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 physician or advanced practice registered nurse. Died.

Kansas Neonatal sequencing Introduced

Expanding newborn screening services and increasing transfer from the medical assistance fee fund to the Kansas newborn screening fund.

New Jersey Privacy Died

Expands the state law on discrimination by prohibiting any entity that operates a health program or activity from: 1. Excluding participation in, deny the benefits of, or otherwise discriminate under any health program or activity on the basis of an individual�s genetic information or 2. Aiding or perpetuating discrimination against any person by providing significant assistance to any entity or person that discriminates on the basis of genetic information. Died.

New Jersey Health Insurance Nondiscrimination Died

Expands the state law on discrimination by prohibiting any entity that operates a health program or activity from: 1. Excluding participation in, deny the benefits of, or otherwise discriminate under any health program or activity on the basis of an individual�s genetic information or 2. Aiding or perpetuating discrimination against any person by providing significant assistance to any entity or person that discriminates on the basis of genetic information. Died.

Tennessee Other Topics Enacted

Extends the sunset date of the genetic advisory committee to June 30, 2025. Signed by the Governor 3/22/2019. Pub. Ch. 43.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. Died.

Tennessee Privacy Died

Following discovery or notification of a breach of system security by an information holder, the information holder must disclose the breach of system security to any resident of the state whose personal information was, or is reasonably believed to have been, acquired by an unauthorized person. Personal information includes a DNA profile. 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 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.

Oklahoma Employment Nondiscrimination Statute

For purposes of distinguishing between or discriminating against or restricting any right or benefit otherwise due or available to an employee or prospective employee other than in connection with the determination of insurance coverage or benefits an employer may not (1) seek to obtain or use a genetic test or genetic information of the employee or the prospective employee, or (2) require a genetic test of or require genetic information from the employee or prospective employee.

Idaho 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.

Massachusetts Other Lines of Insurance Nondiscrimination, Privacy, Research Statute

Genetic information contained in reports or records held by hospitals, laboratories, physicians, insurance institutions and others named in the statute may not be divulged without informed written consent with some exceptions, which include in connection with life, disability, and long term care insurance, as allowable, or as 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. Additional provisions concerning the performance of genetic tests apply to laboratories and other facilities. Organizations conducting pharmoco-economic studies in systematic research to determine the cost benefits of specific treatment for genetic based disease are exempt from the need to re-obtain informed consent. A person whose rights have been violated may bring a civil action.

Arizona Health Insurance Nondiscrimination Statute

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

Georgia 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.

Colorado Other Lines of Insurance Nondiscrimination, Privacy, Research Statute

Genetic information is the property of the individual to whom it pertains. Release of genetic information that identifies the person tested for purposes other than diagnosis, treatment and therapy requires specific written consent. Exemptions under the law include some uses by research facilities. researchers may use genetic testing information for scientific research as long as the identity of any individual to whom the information pertains is not disclosed to any third party except that the individuals identity may be disclosed to the individuals physician with written consent. Group disability or long-term care insurers that receive genetic information may not seek, use or keep the information for any non-therapeutic or underwriting purpose. Life insurers and individual disability insurers may not perform a genetic test without informed consent. Penalties are set forth for unfair trade practices with respect to group disability and long-term care insurance.

Minnesota Privacy, Use of Residual Newborn Screening Specimens Statute

Genetic information may be collected by a government entity or any other person only with written informed consent, used only for the purposes stated in the consent, be stored only for the duration consented, and disseminated only with an individuals consent. Consent to allow dissemination is only valid for one year or a lesser period if specified in the consent. Newborn screening activities are covered under the law.

Mississippi Health Insurance Nondiscrimination Died

Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Measure failed.

Massachusetts Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis under the definitions for chapter 176M on nongroup health plans and 176J on small group health insurance.

Utah Health Insurance Nondiscrimination Statute

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. The genetic testing privacy act, which prohibits health insurance discrimination, is applicable to insurers except as permitted under the Medicare Supplement Minimum Standards Act. The insurance commissioner may adopt rules regarding nondiscrimination for genetic testing or genetic information in Medicare supplement policies and certificates.

Illinois 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.

Colorado Health Insurance Nondiscrimination, Privacy, Research Statute

Genetic information the property of the individual, and written consent is required for its disclosure other than for diagnosis, treatment or therapy. Health care entities may not retain or use genetic information for non-therapeutic purposes or request or require a genetic test; however, test results may be used on a limited basis to make payment decisions. Exceptions under the law include the use of genetic information for scientific research if the identity of the individual to whom the genetic information pertains is not disclosed to a third party other than the individuals physician with written consent. The law provides remedies for individuals whose rights are violated.

Nevada Employment Nondiscrimination Statute

genetic_discrimination with regard to apprenticeship agreements is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information.

Virginia Privacy Died

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. Died.

Utah Privacy Statute

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities.

Utah Privacy Enacted

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities. Signed by the Governor on 3/23/2016.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

California Privacy Enacted

Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. Note: AB 375 was amended in June of 2018. Earlier versions of the bill do not address biometric information, including DNA. June 28, 2018 Signed by the Governor.

California Privacy Statute

Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. On or before January 1, 2020, the Attorney General must solicit broad public participation to adopt regulations to further the requirements set forth in the law.

New Hampshire Privacy Died

Grants consumers the right to request that a business disclose the type of personal information it collects, the purpose for which it is collected, and the categories of third parties with which it is shared. Authorizes consumers to opt out of the sale of their personal information. Personal information is defined to include biometric information such as an individual's DNA. 10/29/2020 Interim Study Report: Recommended for Future Legislation (Vote 10-5). Died.

Oklahoma Health Insurance Nondiscrimination Statute

Group accident and sickness policies may not treat genetic information as a pre-existing condition or base eligibility or continued eligibility of any individual on health-status-related factors, including genetic information.

South Carolina Health Insurance Nondiscrimination Statute

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

Alabama Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Health and disability insurers may not deny applicants insurance coverage because of a diagnosis of sickle cell anemia.

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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. 

Last updated: February 8, 2024