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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 Sort ascending Primary Link Topic(s) Bill Status Summary
North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Pending

Prohibits discrimination based on various characteristics such as genetic information in the following areas: housing; employment; lending; education; public accommodation; insurance; and jury service. Carries over to 2022.

North Carolina Health Insurance Nondiscrimination Died

Prohibits an association health plan or sponsoring association from conditioning eligibility for coverage, including continuing eligibility for coverage, on health-status factors such as genetic information. Died.

North Carolina Other Topics Pending

Establishes certain rights of perinatal care patients, including the right to receive care and treatment free from discrimination based on characteristics such as genetic information. Carries over to 2022.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

North Carolina Privacy Pending

Creates the Consumer Data privacy Act of North Carolina. Prohibits data controllers from processing sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of sensitive data concerning a known child, without processing such data in accordance with the federal Children's Online privacy Protection Act. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022.

North Carolina Health Insurance Nondiscrimination Enacted

This bill requires health benefit plans and insurers to comply with all applicable standards of Public Law 110-233, known as the Genetic Information Nondiscrimination Act of 2008, as amended by Public Law 110-343, and as further amended. Signed by the Governor July 31, 2009.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

North Carolina Employment Nondiscrimination Enacted

Sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information. Signed by the Governor August 21, 2013.

North Carolina Employment Nondiscrimination Died

Amends genetic nondiscrimination in employment statute. Deletes existing provision related to genetic information and adds protected classes or protected categories, which is defined to include predisposing genetic characteristics. Died.

North Carolina Employment Nondiscrimination Statute

The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information.

North Carolina Health Insurance Nondiscrimination Enacted

A sponsoring association of an employee welfare benefit program may not condition eligibility for coverage, including continuing eligibility for coverage, on health status related factors such as genetic information. 8/26/2019 Became law without signature.

North Carolina Other Lines of Insurance Nondiscrimination Statute

No insurance company may refuse to issue or deliver any policy of life insurance solely by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A policy also may not carry a higher premium rate or charge by reason of the fact that the person to be insured possesses these traits.

North Carolina Employment Nondiscrimination, Other Topics Died

Creates the Equal Employment and Equal Access to Public Accommodations Act. Declares that it is the public policy of the State to protect and safeguard the right and opportunity to all individuals to seek, obtain and hold employment without discrimination or abridgment and to enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination because of race, sex, national origin, citizenship, religion, age, veteran status, genetic information, pregnancy, handicap, or disability. Declares that it is the policy of the State Board of Community Colleges, local boards of trustees of the State of North Carolina, and the Board of Governors of the University of North Carolina not to discriminate among students. Died.

North Carolina Health Insurance Nondiscrimination Statute

A health benefit plan, health maintenance organization or multiple employer welfare arrangement may not raise the premium or contribution rates paid for a group health benefit plan, refuse to issue or deliver a health benefit plan, or charge a higher premium rate or charge because of genetic information. Health benefit plans must comply with all applicable standards of the federal Genetic Information Nondiscrimination Act. Insurers providing accident and sickness policies or hospital, medical, or dental health service may not refuse to issue or deliver any policy that affords benefits or coverage for any medical treatment or service authorized or permitted by specified entities or carry a higher premium rate or charge by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A group health insurer may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, or treat genetic information as a pre-existing condition in the absence of a diagnosis. An individual health insurer may not increase an individual's renewal premium for continued health_insurance_coverage based on a health statusrelated factors, including genetic information. A sponsoring association of an employee welfare benefit program may not condition eligibility for coverage, including continuing eligibility for coverage, on health status related factors such as genetic information.

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

Prohibits discriminatory housing practices based on protected status, which includes genetic information. Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to 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.

North Carolina Employment Nondiscrimination Statute

A person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity may not deny or refuse employment to or discharge any person or because of the person's having requested genetic testing or counseling services, on the basis of genetic information obtained concerning the person or a member of the person's family, or because the person possesses sickle cell trait or hemoglobin C trait.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

New York Health Insurance Coverage Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Coverage must include testing and any subsequent treatment based on the results of the test for people with a significant risk of contracting cancer. Died.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by employers and insurers. Measure failed.

New York Employment Nondiscrimination Died

Prohibits hiring parties from subjecting a model to harassment based on various factors, including predisposing genetic characteristics. Died.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill establishes a genetics advisory council to study various topics, including the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

New York Employment Nondiscrimination Statute

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

New York Other Topics Died

Prohibits the distribution of consumers' DNA profiles submitted to direct-to-consumer genetic testing companies. Requires companies to provide a copy of their privacy policy to any consumer that submits a DNA sample and provides for civil penalties for violations of these provisions. 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.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on a insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security the information. Personal information is defined to include biometric information such as DNA. Died.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

New York Privacy Pending

Enacts the NY privacy act to require companies to disclose their methods of de-identifying personal information such as biometric information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared. Biometric information is defined to include DNA. Carries over to 2022.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

New York Employment Nondiscrimination Enacted

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work. Protected class includes predisposing genetic characteristic. 4/3/2020 Signed by the Governor.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by insurers and employers. Measure failed.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex; requires reporting certain information relating to the collection of data, and provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

New York Employment Nondiscrimination Statute

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work.

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.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination, Privacy Died

Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits of genetic tests to all citizens regardless of race, ethnicity or economic status; and (2) the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

New York Other Topics Enacted

Establishes a Hate Crime Task Force. The task force will issue reports and publications in conjunction with the Division on Human Rights to combat discrimination based on a variety of factors, including genetic predisposition status. 04/20/2017 Signed by the Governor Chapter 55.

New York Health Insurance Coverage Died

This bill requires health insurers to cover genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

New York Other Topics Pending

Establishes a genetics advisory council. Requires a preliminary report to the governor and legislature before March 1, 2023 and a final report by December 1, 2023 on issues relating to genetic counseling, genetic testing and public education. Carries over to 2022.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer. Additional coverage for computed tomography, barium enema X-rays, magnetic resonance imaging (MRI), positron emission tomography, laparoscopy, colonoscopy and biopsy if a person is at increased risk for ovarian cancer due to specified factors, including positive genetic testing. Died.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

New York Health Insurance Nondiscrimination Died

This bill prohibits group or blanket policies that cover 51 or more employees for hospital, medical, major medical, or similar type comprehensive coverage from excluding members or dependents or establishing rates based on predisposing genetic characteristics. The bill also prohibits health insurers from requiring or using tests for or information about predisposing genetic characteristics for underwriting. The same restrictions are imposed upon hospital service corporations, health services corporation and medical expense indemnity corporations covering 51 or more employees. Measure failed.

New York Employment Nondiscrimination Died

Prohibits an employer, licensing agency, employment agency, or labor organization from subjecting an individual to discriminatory harassment based on various factors, including predisposing genetic characteristics. Prohibits subjecting domestic workers to unwelcome harassment based on genetic information. Died.

New York Health Insurance Coverage Died

Requires policies of hospital, surgical or medical care to provide coverage for ovarian cancer screening. These policies also must provide coverage for specific services if a person is believed to be at increased risk of ovarian cancer to due to family history, personal history or positive genetic testing. Died.

New York Privacy Statute

Directs the director of the office of information technology services to conduct a study on the use of biometric identifying technology. Prohibits the use of biometric identifying technology in schools until July 1, 2022 or until the commissioner of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence.

New York Privacy Died

Establishes a personal information bill of rights. Declares the right of all New Yorkers to have their personal information, including DNA, protected. Died.

New York Other Topics, Privacy Pending

Prohibits businesses from processing personal information for the purpose of advertising, marketing, soliciting, offering, selling, leasing, licensing, renting, or otherwise commercially contracting for employment, finance, health care, credit, insurance, housing, or education opportunities, in a manner that discriminates against or otherwise makes the opportunity unavailable on the basis of an individual's or class of individuals' actual or perceived predisposing genetic characteristics. Requires businesses to obtain freely given, specific, informed, and unambiguous opt-in consent from an individual to: (a) Process such individual's personal information; and (b) Make any changes in the processing of such individual's information that necessitate a change to the entity's required short-form privacy notice. Carries over to 2022.

New York Health Insurance Coverage Died

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

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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