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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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 Summary
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.

Michigan Health Insurance Nondiscrimination Died

This bill allows a health insurer to request a genetic test as additional information for prior authorization. (See version passed by the Senate). Measure failed.

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.

Mississippi Health Insurance Nondiscrimination Died

Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. Measure failed.

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 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 Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of people with a family history of cancer when his or her physician determines that there is a significant risk of developing cancer. Measure failed.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. Measure failed.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Health Insurance Nondiscrimination Died

This 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.

New York Health Insurance Nondiscrimination Died

This bill prohibits any group or blanket health insurance policy from excluding coverage for any group member based on a predisposing genetic characteristic, and prohibits any hospital service corporation, health service corporation or medical expense indemnity corporation contract from excluding coverage for any group member based on predisposing genetic characteristics. Measure failed.

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 Dakota Use of Residual Newborn Screening Specimens Enacted

This bill amends the statute that allows the health council to authorize the use of newborn metabolic screening tests for legitimate research purposes by broadening the term "newborn metabolic screening tests" to include "newborn metabolic and genetic disease screening tests." Signed by the Governor April 26, 2011.

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.

Oklahoma Employment Nondiscrimination Enacted

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. Signed by the Governor May 18, 2011.

South Dakota Health Insurance Nondiscrimination Enacted

This bill amends the definitions used in the health_insurance_nondiscrimination law. Signed by the Governor March 8, 2011.

Texas Privacy Died

This bill gives an individual property rights to his or her DNA sample. A person may not collect a DNA sample, perform a genetic test or retain a DNA sample, with few exceptions such as for law enforcement purposes. Measure failed.

Vermont Privacy Died

This bill creates personal property rights to genetic information. The bill also prohibits disclosure of genetic information without informed written consent. Measure failed.

Wisconsin Employment Nondiscrimination Died

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Measure failed.

Wisconsin Employment Nondiscrimination Enacted

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Signed by the Governor April 6, 2012.

Alabama Privacy Died

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

California Privacy, Research Died

This bill creates the Genetic Information privacy Act. The bill prohibits any person from obtaining, analyzing, or disclosing genetic information without the written authorization of the individual to whom the information pertains and requires a separate written authorization for each separate disclosure of an individual's genetic information, with some exceptions such as for law enforcement. The bill permits disaggregated and anonymized data to be used in the manner specified that was collected before the bill's enactment without the authorization described above. The bill also permits the use of disaggregated and anonymized data, as specified, if written authorization is obtained and the data is used for a purpose authorized by the individual to whom the information pertains. Measure failed.

Hawaii Health Insurance Nondiscrimination Died

This bill requires health benefit plans to include lower deductibles and co-payments for non-tobacco smokers and others at low risk. Genetic factors and pre-existing conditions may not be considered a behavior. Measure failed.

Illinois Health Insurance Coverage Died

The Department of Healthcare and Family Services must authorize the provision of, and payment for, a baseline mammograms for women 35-39 and mammograms at certain intervals for women over 40. Women under 40 with risk factors such as positive genetic testing should receive mammograms as medical necessary. Measure failed.

Louisiana Employment Nondiscrimination Died

This bill changes the person in charge of promulgating regulations for genetic monitoring from the executive director of the Louisiana Workforce Commission to the chairman of the Louisiana Commission on Human Rights. Measure failed.

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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. 

  • 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: September 14, 2023