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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.

Louisiana Health Insurance Coverage Enacted

Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations. Signed by the Governor June 5, 2019. Effective January 1, 2020.

Louisiana Health Insurance Coverage Statute

Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations.

Louisiana Health Insurance Coverage Enacted

Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status. 6/1/21 Signed by the Governor. Becomes Act No. 45. Effective 1/1/2022.

Massachusetts Health Insurance Coverage, Other Topics Died

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

Massachusetts Health Insurance Coverage Died

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

Connecticut Health Insurance Coverage Died

Requires health_insurance_coverage for genetic cystic fibrosis screenings for women. Died.

West Virginia Health Insurance Coverage Died

Requires health_insurance_coverage of a comprehensive ultrasound screening if a mammogram demonstrates heterogeneous or dense breast tissue 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 nurse. To House Banking and Insurance 02/23/21. Died.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of preimplantation genetic testing with in vitro fertilization under certain conditions.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage of screening breast ultrasounds and breast MRI, in addition to mammograms, if the patient is at increased risk of cancer based on certain factors such as positive genetic testing. 4/30/2018 In Senate. Accompanied a study order, see S2496.

Massachusetts Health Insurance Coverage Died

Requires health_insurance_coverage of screening breast ultrasounds and breast MRI, in addition to mammograms, if the patient is at increased risk of cancer based on certain factors such as positive genetic testing. 7/18/2018 Accompanied a study order, see H4778.

Connecticut Health Insurance Coverage Died

Requires health_insurance_coverage, without any out-of-pocket expense, for: (1) diagnostic and screening mammograms, breast ultrasounds and magnetic resonance imaging of breasts for all insureds; (2) breast biopsies for all insureds, and (3) prophylactic mastectomies and breast reconstruction surgery for all insureds who have the harmful variant of breast cancer gene one (BRCA1), breast cancer gene two (BRCA2) or any similar gene variant that materially increases breast cancer risk. 1/27/2021 Referred to Joint Committee on Insurance and Real Estate.

Connecticut Health Insurance Coverage Died

Requires individual and group health insurers to provide coverage for breast cancer chemoprevention counseling, risk assessment, genetic testing and counseling for any woman who is at increased risk for breast cancer due to family history, prior personal history of breast cancer, positive genetic testing or other indications as determined by a health care provider. Died.

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.

Nebraska Health Insurance Coverage Died

Requires individual or group sickness and accident insurance policies or subscriber contracts; hospital, medical, or surgical expense-incurred policies; and any self-funded employee benefit plan to the extent not preempted by federal law shall to provide coverage for screening digital breast tomosynthesis and digital magnetic resonance imaging if a woman 40 or older has positive genetic testing. Died.

Hawaii Health Insurance Coverage Died

Requires individual policies of accident and health or sickness insurance to provide coverage for genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Died.

Hawaii Health Insurance Coverage Died

Requires individual policies of accident and health or sickness insurance to provide coverage for genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Died.

Virginia Research Statute

Requires informed consent to conduct human research. Requires institutions or agencies conducting or proposing to conduct or authorize human research to establish a human research review committee.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for magnetic resonance imaging for certain persons for the detection of breast cancer, including women who have tested positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations or one or more first degree relatives test positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations. 3/28/2016 Accompanied a study order, see H4111.

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.

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.

West Virginia Health Insurance Coverage Died

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

West Virginia Health Insurance Coverage Died

Requires insurance coverage of a comprehensive ultrasound screening of breast if a woman is believed to be at increased risk of cancer based on several factors, including positive genetic testing. Died.

Montana Other Topics Died

Requires lobbyists to complete harassment prevention training. Harassment is defined to include unwelcome verbal or physical conduct that denigrates or shows hostility or aversion toward an individual on the basis of genetic information. 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