NHGRI logo

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.

State Primary Link Topic(s) Bill Status Summary
Massachusetts Privacy Pending

Amends statute to protect biometric information under the security breach law. Adds biometric indicator or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including genetic information, to the scope of information covered under the law. Carries over to 2022.

Massachusetts Health Insurance Coverage Pending

Requires certain insurers to provide coverage for screening breast ultrasound or screening breast magnetic resonance imaging examination if the patient has additional risk factors for breast cancer including, but not limited to, family history and positive genetic testing. Carries over to 2022.

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. 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 session.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

Minnesota Privacy Enacted

Relates to consumer data privacy. Establishes business obligations regarding: (1) collection and disclosure of personal information; and (2) sale of personal information to third parties. Gives various rights to consumers regarding personal data. Personal information includes biometric information such as genetic information. Carries over to 2022 session.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making pharmacogenomics available statewide. Carries over to 2022 session.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. 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 session.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making
pharmacogenomics available statewide. Carries over to 2022 session.

Missouri Research, Use of Residual Newborn Screening Specimens Died

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/13/2021 Reported Do Pass House Rules Committee. Died.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/22/2021 Voted Do Pass Senate Insurance and Banking Committee. Died.

Nevada Health Insurance Coverage Died

Requires the State Plan for Medicaid to pay the nonfederal share of expenditures incurred to perform genetic testing to detect birth defects in the fetus of a pregnant woman who is 40 years of age or older. Died.

Nevada Health Insurance Coverage Enacted

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. 5/27/2021 Approved by the Governor. Effective 1/1/2022.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

New Hampshire Privacy Died

When an individual consents to receive assistance from a health or social service agency in the state, the consent given to the initial health or social service agency to use the individual's personal information may not be transferred to or retained by any other health or social service agency, network, or entity. No health or social service agency in the state may require a individual's consent to share personal information with another health or social service agency in the state or another state as a prerequisite for such individual to receive services from such health or social service agency, including consent to share details regarding which health or social service agency the individual has received help from in the past and associated information related to that interaction. A health or social service agency must explicitly and in writing inform any individual seeking such assistance that lack of consent will not affect the individual's ability to receive health or social services from the agency and that the individual will not be otherwise penalized. Personal information is defined to include DNA. Hearing on 2/08/2021. Carries over to 2022.

New Jersey Employment Nondiscrimination, Other Topics Died

Requires adoption of and training on anti-discrimination and anti-harassment policy by certain campaign committees. Protected category includes genetic information. Died.

New Jersey Privacy Died

Prohibits a teaching staff member employed by a board of education from inputting the individually identifiable health information of a student or members of a student�s family, or conversations concerning such information, into a third party software application managed by an entity that engages in partisan political activity. The bill defines individually identifiable health information as any information, including genetic or vaccination information, relating to the past, present, or future physical or mental health or condition of an individual that either identifies the individual or could reasonably be used to identify the individual. Died.

New Jersey Privacy Died

Prohibits a teaching staff member employed by a board of education from inputting the individually identifiable health information of a student or members of a student�s family, or conversations concerning such information, into a third party software application managed by an entity that engages in partisan political activity. The bill defines individually identifiable health information as any information, including genetic or vaccination information, relating to the past, present, or future physical or mental health or condition of an individual that either identifies the individual or could reasonably be used to identify the individual. Died.

New Mexico Employment Nondiscrimination, Other Topics, Privacy Died

Establishes that every person, whether a minor or an adult, has the right of bodily integrity and the freedom to assert that right. A person may not be discriminated agains or denied public accommodation, housing accommodation, employment, government services or any other services offered to the general public or otherwise penalized for the assertion of the right of bodily integrity, including the right not to provide samples of bodily fluids, bodily tissue or genetic material. Died.

New York Health Insurance Coverage Pending

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk thereof. Carries over to 2022.

New York Privacy Pending

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. Biometric information is defined to include DNA. 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.

New York Research Pending

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. 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. Provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Carries over to 2022.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

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 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 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 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 Privacy Pending

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Requires companies to file a biennial climate report. The requirements for the form and content of the climate report at a minimum must include: (i) Company climate surveys to be filled out anonymously by employees, which are designed to assess such company's workplace environment including, but not limited to, pay equity, sexual harassment and discrimination based on an individual's age, race, creed, color, national origin, sexual orientation, military status, sex, disability, predisposing genetic characteristics, familial status, marital status or domestic violence victim status. Carries over to 2022.

New York Privacy Enacted

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. 1/28/2021 Signed by the Governor. Effective immediately.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Carries over to 2022.

New York Privacy Pending

Establishes the "It's Your Data Act" for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information, including biometric data. 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.

New York Health Insurance Coverage Pending

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

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 Other Topics Enacted

Prohibits the state, or any agency or bureau, or any other entity from denying a refugee resettlement anywhere within the state based on any criterion, method of administration, or practice that has the purpose or effect of discriminating on the basis of various factors, including predisposing genetic characteristics. Carries over to 2022.

New York Privacy Enacted

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. 1/25/2021 Substituted by A954. 1/28/2021 Signed by the Governor. Effective immediately.

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 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 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 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 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 Dakota Health Insurance Coverage Died

Requires the public employees retirement board to provide coverage for the expenses of the diagnosis of infertility, fertility treatment, and standard fertility preservation services if recommended and medically necessary. Fertility treatment includes genetic testing. Died.

Displaying 801 - 850 of 1175

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