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.

Search

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

Colorado Health Insurance Coverage Died

Amends the health care coverage law for breast cancer screening by requiring coverage for a person with an increased lifetime risk of breast cancer determined by a risk factor model such as Tyrer-Cuzick, BRCAPro, or Gail. 05/02/2016 In Senate Committee on State, Veterans, & Military Affairs. Postponed Indefinitely.

Idaho Other Topics Died

Worker's compensation is payable for disability or death of an employee resulting from occupational diseases, including breast cancer, if certain criteria are met. Criteria includes: (1) diagnosis of breast cancer after five years of employment, before the age of 40, without BRCA 1 or BRCA 2 genetic predisposition; and (2) the disease must not have been revealed during an initial employment medical screening exam or during any subsequent medical review. Died.

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.

Connecticut Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

Prohibits insurers, health care centers or fraternal benefit societies from purchasing information from direct-to-consumer genetic testing; requesting or requiring that a person disclose this information; or using such information in connection with the issuance, extension, renewal or withholding of an annuity, life insurance or health insurance. Insurers may not make provision of any insurance coverage, benefit, rate or term based on a requirement to undergo genetic testing or the results of a genetic test of an individual's family unless the results are in the individual's medical record. Died.

Illinois Privacy Died

Amends the School Code to add provisions concerning student and educator data privacy. Protections cover biometric records, defined to include DNA. Died.

Maryland Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing only if certain conditions are met. 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.

Mississippi Health Insurance Nondiscrimination, Privacy Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

New Hampshire Privacy Died

Prohibits information or service providers from directly or indirectly transferring, disclosing or otherwise making available to any person or government any personal information, including genetic profiles and DNA/RNA, related to individuals without written consent. 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.

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

Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to (1) enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination; and 2) 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.

Utah Employment Nondiscrimination, Health Insurance Nondiscrimination Died

Removes provisions regulating an employer's and a health insurer's use of personal genetic information. Died.

Wisconsin Employment Nondiscrimination Died

Allows the Department of Workforce Development or an individual who is alleged or was found to have been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court in addition to or in lieu of filing an administrative complaint, with some exceptions. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

California Use of Residual Newborn Screening Specimens Died

States that a newborn sample may not be used for medical research if a parent or guardian of the newborn child objects to the testing program. The bill would require the department to provide information about the testing program, and to obtain a form signed by the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child�s blood sample for medical research. Died.

Florida Privacy Died

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 4/21/2021 Senate Laid on Table, companion bill passed, see HB 241 (Ch. 2021-199) SJ 547.

Kentucky Other Topics Died

Requires a health facility that provides perinatal care to provide each patient, upon admission or as soon thereafter as reasonably practical, written information regarding the patient's rights, including the right to be free from discrimination on the basis of genetic information. Died.

Maryland Privacy Died

Amends the definition of biometric information under the Maryland Data privacy act. The definition of biometric information referring to a genetic print is stricken. The revised definition of biometric information includes physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

Michigan Employment Nondiscrimination Died

Requires employers of 50 people or more to post a notice that it is illegal under federal law to pay employees different wages for the same work based on certain criteria, including genetic information. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information on students without the express written consent of parents or legal guardians. Biometric information is defined to include a DNA sequence. Died.

New Mexico Employment Nondiscrimination Died

This bill enacts the Uniform Protection of Genetic Information in Employment Act on employee access to genetic information, confidentiality and retention of genetic information and disclosure of genetic information. Measure failed.

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.

South Dakota Health Insurance Nondiscrimination Died

This bill prohibits pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

Washington Privacy Died

Seeks to increase consumer data transparency. The bill address consumer biometric information, which is defined to include DNA. 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.

Alaska Privacy Died

Establishes the Consumer Data privacy Act. Requires businesses to notify consumers before the collection of personal information. Consumers may opt out of the sale of personal information. Businesses must maintain privacy policies available online describing consumer's privacy rights such as the designated methods in which the consumer can request access or deletion of personal information. Biometric information, including deoxyribonucleic acid, is considered personal information. Carries over to 2022 session.

Florida Employment Nondiscrimination Died

This bill prohibits appointments, terminations, assignments, and maintenance of status, compensation, privileges and other terms and conditions of employment in the state personnel system based on genetic information. Measure failed.

Indiana Health Insurance Nondiscrimination Died

An insurer that issues an individual or group policy of accident and sickness insurance, small employer group health insurance plans, and health maintenance organization contracts may not establish rules for eligibility of an individual to enroll or continued enrollment based on any of the following health status related factors, including genetic information. Died.

Maryland Privacy Died

Requires a business, when destroying an employee's or a former employee's records that contain personal information, including a genetic print, to take steps to protect against unauthorized access to or use of the information. States when a business that owns, licenses, or maintains computerized data containing personal information must investigate a security breach. Died.

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.

Mississippi Privacy Died

Creates the parental authority act. Parental rights include the he right to be notified in advance and to refuse or to consent in writing before any record of the minor child's blood or deoxyribonucleic acid (DNA) is created, stored or shared, with some exceptions. 2/23/2016 (H) Died In Committee.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New York Health Insurance Coverage Died

The bill requires every policy of hospital, surgical or medical care or policies that provide reimbursement for laboratory tests or diagnostic X-rays must provide coverage for testing of familial dysautonomia, Canavan's disease and Tay-Sachs. Died.

Oklahoma Employment Nondiscrimination Died

This bill amends statutes pertaining to discriminatory practices in employment, housing, and public accommodations. The bill provides exclusive remedies for individuals alleging discrimination in employment on the basis of genetic information. Measure failed.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the treatment of genetic information as a preexisting condition in the Small Employer Health Insurance Exchange in the absence of a diagnosis of the condition related to such information. Measure failed.

California Health Insurance Coverage Died

A health insurance policy that is issued, amended, or renewed on or after January 1, 2022, may not apply a deductible, copayment, or coinsurance to coverage for screening services for prostate cancer for an insured who meets certain criteria. A person is 40 years of age or older and who is high risk, as determined by the attending or treating health care provider meets the criteria. High risk includes, but is not limited to, a person with a prostate who is Black, has a family history of prostate cancer, has a genetic predisposition to prostate cancer, or is a veteran. Carries over to 2022.

Hawaii Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Died

The bill requires contractors and prospective contractors with the state or counties to comply with the Genetic Information Nondiscrimination Act of 2008. Died.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

In the absence of a medical diagnosis of a disease, disorder or syndrome related to genetic information, a health insurer, life insurer or long-term care insurer may not cancel, limit or deny coverage or establish differentials in premium rates based on such genetic information. A health insurer, life insurer or long-term care insurer may not request, require, purchase or otherwise solicit genetic information; use genetic test results; or consider an individual's decisions or actions relating to genetic testing in any manner for any insurance purpose. 6/10/2021 Reports Read. On motion by Senator Sanborn of Cumberland the Majority Ought Not to Pass. Report accepted. In concurrence. Placed in Legislative Files. Died.

Maryland Other Topics Died

Requires the Maryland Department of Health to do the following: (1) by January 1, 2023, develop gene sequence and customer screening guidelines for gene synthesis providers and manufacturers of gene synthesis equipment that include certain requirements; (2) develop a process to certify that gene synthesis providers and manufacturers of gene synthesis equipment are in compliance with the guidelines requiring, on or after January 1, 2024, the Department to certify certain gene synthesis providers and equipment manufacturers. Gene synthesis provider does not include a research scientist making gene synthesis products for the research scientist's own use or for use by another research scientist. In the House - Withdrawn by Sponsor. Died.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Montana Privacy Died

This bill requires parental consent or consent from a student 18 years or older prior to collecting or recording biometric data, which is defined to include a DNA sequence. Died.

New York Health Insurance Nondiscrimination Died

This 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 Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. 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.

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).

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

New Hampshire Privacy Died

This bill restricts the collection, storage, and sharing of student assessment data by the United States Department of Education and the New Hampshire department of education. Student assessment data includes biometric information, which is defined to include DNA. As of October 30, 2014, Interim Study Report: Not Recommended for Legislation in 2014 (Vote 15-0).

New York Use of Residual Newborn Screening Specimens Died

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

Texas Privacy Died

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization. Died.

Displaying 201 - 250 of 1160

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