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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.

State Primary Link Topic(s) Bill Status Sort descending Summary
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 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.

South Carolina Privacy Died

Sets forth requirements for the collection and use of consumer biometric information by businesses. Biometric information is defined to include an individual's DNA. Died.

Washington Employment Nondiscrimination Died

Concerns harassment and discrimination by legislators and legislative branch employees, including discrimination based on genetic status. Substitute bill, which did not include genetic discirmination provision, was enacted.

California Privacy Died

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it�s privacy policies, at the point of sale of the product, and on product packaging. The notice must contain information about the company's privacy policy. Died.

Hawaii Health Insurance Coverage Died

Requires health insurers, mutual benefit societies, and health maintenance organizations to provide coverage for genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

Maine Privacy Died

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

Massachusetts Privacy Died

Requires the department of consumer affairs and business to adopt regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Personal information includes biometric indicators (or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including but not limited to fingerprints, genetic information, iris or retina patterns, facial characteristics, or hand geometry). 6/27/2018 Accompanied a study order, see H4648.

Mississippi Employment Nondiscrimination Died

This bill prohibits employers from using genetic testing for discriminatory purposes. Civil and criminal penalties for violations are set forth. Measure failed.

New Hampshire Research Died

The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table.

Massachusetts Health Insurance Coverage Died

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

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not use genetic information to establish a pre-existing condition exclusion in the absence of a diagnosis of a condition related to the genetic information. 2/23/2016 (H) Died In Committee.

New Jersey Other Topics Died

Requires testing of infants for genetic mutations associated with the development of hereditary hemochromatosis. Died.

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.

Oklahoma Health Insurance Coverage Died

This bill requires individual and group health insurers that provide coverage on an expense-incurred basis to provide reimbursement not to exceed $115 for mammography screening any female under 35 with a genetic predisposition to breast cancer. Measure failed.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended. Died.

Arkansas Privacy Died

Enacts the Parents' Bill of Rights. A parent must consent in writing before a biometric scan of a minor child or a record of a minor child's blood or DNA is created, shared, or stored. April 2, 2015 Recommended for study in the Interim by Joint Interim Committee on JUDICIARY COMMITTEE- HOUSE

Florida Health Insurance Nondiscrimination Died

Creates Healthy Florida Program for purpose of comprehensive universal single-payer health care coverage. The Board of the program must establish requirements and standards to promote nondiscrimination, including based on genetic information. Died.

Kentucky Privacy Died

Requires certain information holders to encrypt personally identifiable data, which is defined to include a genetic print. Information holders must report a breach of personally identifiable information to consumers. Died.

Maryland Privacy Died

A business that owns or licenses computerized data that includes personal information such as genetic information of an individual must conduct a reasonable and prompt investigation upon the breach of the security of a system. April 3, 2019 Unfavorable Report by Finance.

Maryland Privacy Died

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

Minnesota Health Insurance Nondiscrimination Died

This bill adds supplemental Medicare policies to health insurance plans covered under the state genetic_discrimination Act. HF 1853, which was approved by the Governor, was substituted for this bill.

Montana Other Lines of Insurance Nondiscrimination Died

Amends existing genetic information and insurance law by removing the exclusion of life, disability and long-term care insurance. 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 Health Insurance Coverage Died

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

Tennessee Privacy Died

Prohibits a direct-to-consumer genetic testing business entity from sharing personally identifiable genetic test data or other personally identifiable information about a consumer with a third party without the express written consent of the consumer or a subpoena or court order. Died.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

Connecticut Health Insurance Coverage Died

Adds tomosynthesis to health_insurance_coverage requirements 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.

Idaho Privacy Died

Unless explicitly mandated by federal statute, a state agency, district or education institution must obtain written consent from parents or eligible students before collecting biometric records, defined to include a DNA sequence. Died.

Maryland Employment Nondiscrimination Died

This bill amends the employment discrimination law to state that an unlawful employment practice is established, including discrimination based on genetic information, when the complainant demonstrates that genetic information was a motivating factor for any employment practice even though other factors motivated the practice. Measure failed.

Connecticut Health Insurance Coverage Died

Requires individual health insurance policies to provide coverage for diagnostic and screening mammograms under certain circumstances. Positive genetic testing for the harmful variant of breast cancer gene one, breast cancer gene two or any other gene variant that materially increases the insured's risk for breast cancer fulfills the criteria for required coverage. Died.

Illinois Privacy Died

Amends the Genetic Information privacy Act provisions concerning uses and disclosures for treatment, payment, health care operations, health oversight activities, and public health activities; uses and disclosures of information to a health information exchange; business associates; and establishment and disclosure of limited data sets and de-identified information. Provides that various uses or disclosures of a patient's genetic information may not (rather than may) occur without the patient's consent. 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.

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.

Missouri Health Insurance Nondiscrimination Died

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

New Jersey Health Insurance Coverage Died

Requires a hospital service corporation that provides hospital or medical expense benefits to provide coverage for screening to determine whether genetic counseling related to the BRCA1 or BRCA2 genetic mutations is indicated; genetic counseling; and if indicated, BRCA testing. Died.

New York Other Topics Died

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling. Participation in the program is voluntary, and all information is confidential. Died.

Hawaii Neonatal sequencing Died

Relating to privacy. Prohibits the department of health or any recipient of individually identifiable health information of a newborn child obtained through genetic and metabolic screening tests required by law to disclose to any person other than the newborn child's parents, guardian, or other persons having custody or control of the newborn child, any individually identifiable health information of a newborn child, including disclosure to a law enforcement officer. establishes that any information obtained by a law enforcement officer in violation of this prohibition shall be deemed evidence acquired by unlawful means.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Virginia Employment Nondiscrimination Died

Requires each legislative branch agency to adopt and implement the Commonwealth Workplace Harassment Policy established by the Department of Human Resource Management. Workplace harassment is defined to include harassment based on genetic information. Died.

California Employment Nondiscrimination Died

Prohibits discrimination in a digital marketplace or otherwise acting upon applications to participate with a digital marketplace as a marketplace contractor based on an individual's genetic characteristics. Died.

Georgia Health Insurance Nondiscrimination Died

This bill prohibits a health group cooperative from excluding a small employer based on a health status-related factor, including genetic information in relation to an employee or dependent of an employee. Measure failed.

Louisiana Health Insurance Coverage Died

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for a medically necessary drug on the basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Died.

Maryland Privacy Died

Amends the Personal Information Protection Act by adding activity tracking data to the scope of protected information. Activity tracking data is defined to include genetic information; genetic samples; genetic tests of an individual or family member; and requests for or receipt of a genetic test, genetic counseling or genetic education. 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.

Minnesota Privacy Died

Modifies existing law pertaining to the use of genetic information by government entities and enacts a new consumer protection law regarding the use of genetic information. Died.

New Hampshire Privacy Died

This bill restricts the collection of biometric data, including DNA or RNA, by state agencies, municipalities, and political subdivisions. Died.

New York Health Insurance Nondiscrimination Died

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Privacy Died

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. Died.

Texas Privacy Died

Limits the use of biometric identifiers by governmental bodies. Biometric identifiers are defined to include a DNA sample. Died.

Displaying 201 - 250 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