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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
Pennsylvania Coverage and reimbursement Approved

An Act amending the act of May 17, 1921 (P.L.682, No.284), known as The Insurance Company Law of 1921, in casualty insurance, further providing for coverage for mammographic examinations and diagnost...

Montana Neonatal sequencing Approved

Revise laws related to collection of genetic material for newborn screenings.

Nebraska Genetic discrimination Approved

Adopt the Genetic Information Privacy Act.

New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

Texas Genetic data storage/privacy/sharing (industry) Approved

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

New Hampshire Privacy Died

Prohibits the government from acquiring, retaining, collecting, or using personal information without express written consent with some exceptions such as if a warrant has been issued. Personal information includes DNA/RNA. Died.

New York Health Insurance Nondiscrimination Died

his bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

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.

Texas Privacy Died

Requires an individual or the individual�s authorized representative provide express consent for a person to: (1) obtain the individual �s genetic material or genetic information; (2) perform a genetic analysis of the individual or any other analysis or test of the individual that requires the individual �s genetic material; (3) retain the individual �s genetic material or genetic information; or (4) disclose, including through sale or donation, the individual �s genetic material or genetic information. 3/29/2021 Referred to House Public Health Committee. Died.

Wisconsin Employment Nondiscrimination Died

Addresses actions in circuit court alleging discrimination in employment, unfair honesty testing, or unfair genetic testing. 3/28/2018 Failed to pass pursuant to Senate Joint Resolution 1.

Hawaii Genetic data storage/privacy/sharing (medicine), 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.

Alabama Privacy Died

Creates the Alabama Consumer privacy Act. Allows a consumer to request that a business: (1) disclose personal information that it collects; (2) delete certain personal information; (3) disclose the sale of certain personal information to third parties; and (4) allow a consumer to opt out of the sale of personal information. Prohibits a business from retaliating against a consumer for making a request for disclosure or for opting out and from selling the personal information of a consumer under 18 years of age. Personal information is defined to include biometric information such as DNA. Died.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Indiana Privacy Died

Establishes requirements regarding student education records, personally identifiable information of a student, and certain other information concerning a student. Personally identifiable information includes a DNA sequence. 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.

Michigan Health Insurance Nondiscrimination Died

An insurer may specify in writing the materials and information necessary to constitute a properly completed standard prior authorization request. The request may include patient clinical information, including, but not limited to diagnosis, chart notes, lab information, and genetic tests. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information, including DNA sequences, on students without the express written consent of parents or legal guardians. Died.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New York Employment Nondiscrimination, Other Topics, Privacy Died

Prohibits discrimination based on genetic information in multiple sections of the statutes, including those pertaining to employment, housing, credit, education and other areas. Died.

Rhode Island Health Insurance Coverage Died

Establishes a rare disease medication reinsurance fund. Creates and establishes funding for a rare disease medication advisory council. Based on information from the Secretary of Health and Human Services, the council must recommend the drugs to be covered, an assessment rate, and a funding distribution method. The council must recommend for inclusion only those medications that are high cost prescription drugs, gene therapies or cell therapies designated as orphan drugs by the federal drug administration. 4/1/2021 Committee recommended measure be held for further study. Died.

Washington Health Insurance Coverage Died

Establishes the Healthy Washington program to provide comprehensive universal single-payer health care coverage for all residents of the state. The board of Healthy Washington must create requirements and standards for the program and for health care organizations, care coordinators, and health care providers pertaining to nondiscrimination with respect to members and health care providers on the basis of genetic information. Died.

California Health Insurance Nondiscrimination Died

Creates the California Guaranteed Health Care for All program, or CalCare, to provide comprehensive universal single-payer health care coverage and a health care cost control system for the benefit of all residents of the state. Declares that all California residents regardless of various characteristics, including genetic information, are entitled to full and equal accommodations, advantages, facilities, privileges, or services in all health care providers participating in CalCare. Carries over to 2022.

Hawaii Privacy, Research Died

The bill establishes requirements for the privacy of protected health information, including genetic information. Entities addressed in the bill include health care providers, health care data organizations, health plans, health oversight agencies, public health authorities, employers, insurers, health researchers, or edu�ational institutions. Died.

Maine Health Insurance Coverage Died

As introduced, a health plan must provide coverage for risk assessment for a BRCA gene mutation and genetic counseling or testing, if necessary. Died.

Massachusetts Privacy Died

The bill amends statute sections pertaining to the department of consumer affairs and business regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Changes add biometric information, including genetic information, to the types of personal information protected under the law. Died.

Minnesota 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.

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.

Massachusetts Other Topics Died

Prohibits a local or state administrative, legislative or regulatory body or instrumentality from engaging in a discriminatory land use practice based on genetic information. Died.

Mississippi Health Insurance Nondiscrimination Died

Creates a small business health insurance pool. Genetic information may not be excluded as a preexisting condition in the small business health insurance pool in the absence of a diagnosis of the condition related to the genetic information. Died.

New Jersey Health Insurance Nondiscrimination Died

Establishes the Healthy New Jersey Program. Prohibits discrimination with respect to members and health care providers based on genetic information. Died.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, medical or surgical care to provide coverage for screening for ovarian cancer, upon examination by a physician or other factors, including genetic testing, for an ultrasound at specified periods. Died.

Ohio Health Insurance Coverage Died

This bill prohibits individual or group accident and sickness insurers from excluding coverage for the screening and diagnosis of autism, including genetic testing. Measure failed.

Vermont Privacy Died

Prohibits the state sale of personally identifiable information, including genetic information. Died.

Wyoming Privacy Died

Creates the Student Personal Digital Information Protection Act. The Act establishes protections to safeguard the privacy of student data, including biometric information. It is unclear whether biometric information includes genetic information or a DNA sequence. The term is not defined. Failed 2/13/2017

Arizona Privacy Died

Establishes requirements for controllers upon the receipt of a verified request from consumers to exercise their rights with respect to the processing of personal data, including genetic data for the purpose of uniquely identifying a person. Died.

Florida Privacy Died

Enacts 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. Died.

Kentucky Health Insurance Coverage Died

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.

Maryland Privacy Died

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

Minnesota Privacy Died

This bill adds third generation pedigrees to health data protections that apply to the state health department. This bill also requires government entities to obtain written informed consent to collect genetic information and human biological specimens. Consent must include the purpose for collection, the length of retention, and any dissemination outside the organization that will occur. Measure failed.

Montana Other Lines of Insurance Nondiscrimination Died

This bill amends the genetic nondiscrimination law pertaining to life and disability insurance to exclude high deductible plans. Measure failed.

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 Nondiscrimination Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Died.

Tennessee Privacy Died

Requires a parent, legal guardian, or student, if the student is 18 years of age or older, to provide informed written consent before the collection of individual student biometric data, including DNA. Establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools. 4/18/2018 Companion House bill substituted.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. 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.

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 Employment Nondiscrimination Died

Adds new section to unlawful employment practices statute. 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 genetic information and other factors. 11/16/2020 Accompanied a study order, see S2953. 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