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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 Primary Link Topic(s) Bill Status Summary Sort descending
California Health Insurance Coverage Died

Requires every health care service plan contract, except a specialized health care service plan contract to provide coverage for genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) under certain circumstances. Died.

New York Privacy Died

Requires every personal information recipient to protect the security and integrity of all personal information in their custody from unauthorized access or unauthorized use. Places strict liability on companies where breaches of security allow for personal information to be compromised. Personal information is defined to include biometric information such as DNA. Died.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. Carries over to 2022 session.

Utah Privacy Died

Requires government agencies to provide an annual report to the state auditor detailing the collection, use, and disclosure of personally identifying information, including DNA. Died.

Mississippi Health Insurance Coverage Died

Requires group or individual policies, contracts or certificates of health insurance issued or renewed to cover comprehensive ultrasound screening of an entire breast or breasts 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. 1/30/2018 Died in committee.

Kentucky Health Insurance Coverage Enacted

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network. Signed by the Governor on May 19, 2019. Effective January 1, 2020.

Kentucky Health Insurance Coverage Statute

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network.

West Virginia Health Insurance Nondiscrimination Died

Requires health benefit plans to provide insurance to persons without regard to their health status. Prohibits insurers from using genetic information in decisions regarding premium, deductible, copay or coinsurance. 3/5/2021 To Senate Banking and Insurance Committee. Died.

Vermont Health Insurance Coverage Died

Requires health insurance and Medicaid coverage for chromosomal microarray analysis. 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.

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.

New York Health Insurance Coverage Died

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

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Carries over to 2022.

New York Health Insurance Coverage Died

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

New York Health Insurance Coverage Died

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

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer. Additional coverage for computed tomography, barium enema X-rays, magnetic resonance imaging (MRI), positron emission tomography, laparoscopy, colonoscopy and biopsy if a person is at increased risk for ovarian cancer due to specified factors, including positive genetic testing. Died.

Illinois Privacy Died

Requires health insurance providers to protect health information related to sensitive services. A 2016 House Amendment would define sensitive services to include genetic testing. Died.

New Jersey Coverage and reimbursement Introduced

Requires health insurers to cover additional mammogram examinations and genetic testing and counseling under certain circumstances.

New York Health Insurance Coverage Pending

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

Hawaii Health Insurance Coverage Died

Requires health insurers, mutual benefit societies and health maintenance organizations to provide coverage for: (1) screening to determine whether counseling and testing related to the BRCA1 or BRCA2 genetic mutation is indicated; and (2) genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

Hawaii Health Insurance Coverage Died

Requires health insurers, mutual benefit societies and health maintenance organizations to provide coverage for: (1) screening to determine whether counseling and testing related to the BRCA1 or BRCA2 genetic mutation is indicated; and (2) genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. 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.

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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