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

This bill prohibits an insurer from requesting or requiring a genetic test or from using a genetic test, the results of a genetic test, genetic information, or a request for genetic services to deny or limit life insurance coverage or benefits or to charge a different rate for the same coverage or benefits under an annuity contract; defining terms; and providing for an exception if the use is based on sound actuarial principles. Measure failed.

Maryland Privacy Died

Amends the definition of personal information used in the state data privacy act. Personally identifiable information is defined to include an individual's DNA. Died.

Maryland Health Insurance Nondiscrimination Enacted

Prohibits health insurers, health maintenance organizations, nonprofit health insurance plan or any person or organization that provides health benefits plans from excluding or limiting certain benefits or denying certain coverage based on a health-status related factor, including genetic information. Enacted without Governor's signature 5/8/2020. Effective upon enactment.

Maryland Other Topics, Privacy Died

Requires the Motor Vehicle Administration to offer to an applicant for a driver's license, identification card, or moped operator's permit the opportunity to upgrade to an enhanced identification document. The enhanced ID will be embedded with memory and a microprocessor chip that stores biometric identifiers, which may include DNA. Died.

Maryland Other Topics Statute

Establishes requirements for the use of genetic genealogical DNA analysis for criminal justice purposes.

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 Health Insurance Nondiscrimination, Other Topics Died

Declares that it is the policy of the state to provide affordable health care to all regardless of various factors, including genetic information. Prohibits discrimination based on genetic information by a hospital; a person licensed or otherwise regulated by the Maryland Department of Health; and a person, including a health maintenance organization, that provides health benefits and has a certificate of authority from issued by the Maryland Department of Insurance. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information to provide certain clear and conspicuous notices to the consumer at or before the point of collection. The bill defines biometric information to include an individual's DNA. In the Senate - First Reading Senate Rules. Died.

Maryland Privacy Died

Requires certain state and local governmental units to secure by encryption personal information of an individual that the unit has collected as computerized data. Personal information includes a genetic print or image. Died.

Maryland Employment Nondiscrimination Statute

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.

Maryland Health Insurance Nondiscrimination Enacted

Amends existing law pertaining to carriers, defined as insurers, nonprofit health service plans and health maintenance organizations, that offer wellness programs. Health factors are defined to include genetic information. Carriers may seek verification from health care providers that a health factor makes 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. Approved by the Governor April 8, 2014.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill repeals an exemption for disability insurance under the state genetic nondiscrimination law and amends the definition of genetic information used in the health_insurance_nondiscrimination law. Measure failed.

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, Privacy Enacted

This bill establishes that a certain forensic genetic genealogical DNA analysis and search may not be initiated without certifying certain information before a court and obtaining a certain authorization from the court; prohibits certain biological samples subjected to certain forensic genetic genealogical profile analysis to be used to determine certain information about a certain donor; requires the Department of Public Safety and Correctional Services to produce a certain annual report; etc.

Maryland Other Topics, Privacy Died

Permits a health insurance carrier to make available upon request an upgrade to a biometric health care identification card that can securely validate one's identity and access his or her medical history. Biometric identification is defined to include DNA. Died.

Maryland Research Statute

The law prohibits research using a human subject unless the person conducts the research in accordance with the federal regulations on the protection of human subjects.

Maryland Privacy Died

Establishes consumer protections pertaining to the collection, possession, use, disclosure and retention of biometric identifiers. Biometric information is defined to include genetic markers and genetic testing information. Died.

Maryland Other Topics Died

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

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

Maryland Privacy Enacted

Amends the Maryland Personal Information Protection Act. Requires a business to inform an employee or a former employee in the event of a breach of a security system that contains personal information, including a genetic print. A business subject to HIPAA is considered to be in compliance with the law. 5/4/2017 Approved by the Governor. Chapter 518. Effective January 1, 2018.

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 exemptions. The bill also provides personal property rights to DNA samples and DNA test results and requires the health department to develop a uniform written informed consent form. Penalties are set forth for violations. Measure failed.

Maryland Privacy Died

Enacts the Online Consumer Protection Act. Defines biometric information to include an individual's DNA. Died.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

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

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

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

Massachusetts Employment Nondiscrimination Statute

An employer may not discriminate against an individual in compensation or in terms, conditions or privileges of employment, unless based upon a bona fide occupational qualification, because of genetic information. The statutes include nondiscrimination provisions that apply to other entities, including but not limited to labor organizations and employment agencies. The Massachusetts Commission against discrimination investigates complaints of unfair discrimination based on genetic information.

Massachusetts Privacy Pending

Establishes protections relative to the processing of personal data and the free movement of personal data. Prohibits the processing of genetic data or biometric data for the purpose of uniquely identifying a natural person with certain exceptions. Carries over to 2022.

Massachusetts Privacy Died

Prohibits a public agency or public official from: (1) acquiring, possessing, accessing, using, or assisting with the use of or provide resources for the development or use of any biometric surveillance system, or (2) entering into a contract with or making a request to any third party for the purpose of acquiring, possessing, accessing or using information derived from a biometric surveillance system, unless expressly authorized by law. Biometric data is defined to include deoxyribonucleic acid. Died.

Massachusetts Health Insurance Coverage Died

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

Massachusetts Research Enacted

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Signed by the Governor 12/19/2014.

Massachusetts Health Insurance Coverage Died

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

Massachusetts Privacy Died

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

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

Massachusetts Health Insurance Nondiscrimination Statute

A health maintenance organization, company, insurance broker, medical service corporation, non-profit hospital service corporation or preferred provider organization may not cancel, refuse to issue or renew, or make any distinction or discrimination in the amount of payment of premium or rates charged, in the length of coverage or in any of the terms and conditions based on genetic information. These entities may not require genetic tests or private genetic information.

Massachusetts Other Topics Died

Prohibits any person whose business includes sponsoring, guaranteeing or granting funds or engaging in investment transactions from discriminating against any person in the sponsoring, guaranteeing or granting of funds or making available such funds, because of various factors, including genetic information. 2/27/2020 Accompanied study order. Died.

Massachusetts Health Insurance Coverage, Other Topics Died

Requires health_insurance_coverage for certain genetically targeted drugs for Duchenne muscular dystrophy. Died.

Massachusetts Employment Nondiscrimination Enacted

Establishes that it is House policy and practice to assign, promote and compensate employees on the basis of qualifications, merit, and competence. Prohibits employment practices that are influenced or affected by virtue of an applicant's or employee's genetic information. 1/30/2019 Order adopted and published as amended.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality to from engaging in a discriminatory land use practice, including practices based on genetic information. Accompanied a study order, see H5081. Died.

Massachusetts Health Insurance Coverage Died

Individual or group policies of accident and sickness insurance, except policies providing supplemental coverage to Medicare or to other government programs, delivered, issued or renewed by agreement within or without the commonwealth must provide coverage for breast cancer screening technology, including, but not limited to, Magnetic Resonance Imaging (MRI) for high risk women. Coverage must be provided not less than once annually to women 25 years and older. High risk women, include, but are not limited to women who test positive for BRCA 1 or 2 or who have one or more first degree relatives that have tested positive for BRCA 1 or 2. Reporting date extended to Thursday July 31, 2014, pending concurrence. Died.

Massachusetts Privacy Pending

Establishes requirements for specified persons, partnerships or corporations that maintain high-risk information systems. A high-risk information system involves the personal information of a significant numbers of consumers regarding various characteristics, including genetic data. Carries over to 2022.

Massachusetts Other Lines of Insurance Nondiscrimination Statute

An insurer, agent or broker authorized to issue life insurance policies, policies against disability from injury or disease or policies for long-term care may not practice unfair discrimination because of the results of a genetic test or the provision of genetic information or require an applicant to undergo a genetic test as a condition of issuance or renewal of a policy. Unfair discrimination involves discriminatory practices against persons unless such action is based on reliable information relating to the insureds mortality or morbidity and based on sound actuarial principles or actual or reasonably anticipated claim experience. These insurers may ask if an applicant has taken a genetic test.

Massachusetts Other Topics Died

Requires that certain state entities make a dedicated effort to encourage diversity and advance equity based on race, color, religious creed, national origin, sex, gender identity, sexual orientation, genetic information, ancestry, disability, and language in any recommendations, policies, programs and initiatives developed. 1/5/2021 In Senate. No further action taken. Died.

Massachusetts Health Insurance Coverage Died

Requires coverage for the diagnosis of Alfi's Syndrome, including genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Massachusetts Other Topics Died

Pertains to municipal master plans. Master plans developed should take into account to the extent feasible ways in which future policies and programs can advance equity based on various factors such as genetic information. Died.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Massachusetts Employment Nondiscrimination Pending

Requires the commission on workplace harassment and sexual assault in the legislature to research and develop model workplace harassment policies for consideration and use by the Senate and House of Representatives. The model policies must address identity-based harassment, including harassment based on genetic information. Carries over to 2022.

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.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. Died.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the Fiscal Year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

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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