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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2007-2020 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.

  • 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 Citation/Title Sort descending Topic(s) Bill Status Summary
Maryland 2020 State Bills
Maryland 2020 HB 784
Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection.  Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information.  Requires a business to comply with a request for information within 45 days after receiving a request.  Died.

California 2020 State Bills
California 2020 SB 980
Privacy Vetoed

Establishes the Genetic Information Privacy Act, which would prohibit a direct-to-consumer genetic testing services company from disclosing genetic information to a third party without prior written consent.  9/25/2020 Vetoed by the Governor. 

North Carolina 2020 State Bills
North Carolina 2020 S786
Employment Nondiscrimination Died

Amends genetic nondiscrimination in employment statute.  Deletes existing provision related to genetic information and adds protected classes or protected categories, which is defined to include predisposing genetic characteristics.  Died.

Maryland 2020 State Bills
Maryland 2020 HB 340
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.

Missouri 2020 State Bills
Missouri 2020 HB 1616
Health Insurance Nondiscrimination Died

Prohibits a health carrier offering group health insurance coverage in connection with a group health plan from adjusting premium or contribution amounts for the group covered under such plan on the basis of genetic information.  Such health carriers may request, but shall not require, that a participant or beneficiary undergo a genetic test if certain conditions are met. Died. 

Wisconsin 2020 State Bills
Wisconsin 2020 AB 871
Privacy Died

Sets forth requirements regarding the deletion of consumer personal data, including genetic data, by controllers.  4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

New Jersey 2020 State Bills
New Jersey 2020 SJR 25
Other Topics Pending

Establishes New Jersey Pharmacogenomics Commission. Carries over to 2021. 

Illinois 2020 State Bills
Illinois 2020 HB 5603
Privacy Died

Creates the Consumer Privacy Act.  Personal information is defined to include biometric information such as deoxyribonucleic acid.  Provides consumers rights with regard to the collection and use of personal information businesses. Died.

Utah 2020 State Bills
Utah 2020 HB 231
Employment Nondiscrimination, Health Insurance Nondiscrimination Died

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

Louisiana 2020 State Bills
Louisiana 2020 HB 408
Health Insurance Coverage Died

Requires coverage of cancer treatment targeting a specific genetic mutation.  Prohibits a health coverage plan from denying coverage for a medically necessary drug on the basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer.  Died.

Florida 2020 State Bills
Florida 2020 SB 1564
Other Lines of Insurance Nondiscrimination, Privacy Died

Specifies criteria that must be met before a life insurer, long-term care insurer, or disability income insurer may use genetic information for underwriting purposes.  Prohibits a life, long-term care, or disability income insurer from canceling coverage based solely on genetic information; requiring an applicant to take a genetic test as a condition of insurability; or obtaining, requesting, or otherwise requiring the complete genome sequence of an applicant’s DNA.  Requires written consent for companies providing direct-to-consumer commercial genetic testing to share information about a consumer with a life insurer or health insurer.  HB 1189 Substituted. Died.

Maryland 2020 State Bills
Maryland 2020 SB 957
Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection.  Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information.  Requires a business to comply with a request for information within 45 days after receiving a request.  Died.

California 2020 State Bills
California 2020 AB 2301
Privacy Died

Amends statute pertaining to security requirements for business that own, license, or maintain personal information about a California resident. This bill would add genetic information to the definition of personal information under the law. Died. 

Pennsylvania 2020 State Bills
Pennsylvania 2020 HB 2558
Health Insurance Nondiscrimination Died

Prohibits a health insurer from discriminating against a qualified individual or group based on a preexisting medical condition.  Preexisting medical condition is defined to include a genetic defect for which medical advice, diagnosis, care or treatment has been recommended or received prior to the effective date of coverage.  Died.

Maryland 2020 State Bills
Maryland 2020 SB 274
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.

Missouri 2020 State Bills
Missouri 2020 HB 2375
Privacy Died

Prohibits a person or entity from disclosing, obtaining, retaining, or using any biometric data about an individual, including DNA, with whom the person or entity is engaged in trade or commerce for any purpose other than that which the individual reasonably expects.  Died. 

Georgia 2021 State Bills
Georgia 2021 HB 115
Other Lines of Insurance Nondiscrimination Pending

Prohibits life and long-term care insurers that receive information from genetic testing from using the information for any non-therapeutic purpose, including, but not limited to, canceling, limiting, or denying coverage or establishing differentials in premium rates. These insurers also may not require or solicit genetic information, use genetic testing results, or  consider a person's decisions or actions related to genetic testing in any manner for any  insurance purpose. Carries over to 2022 session.

West Virginia 2021 State Bills
West Virginia 2021 SB 567
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. 

Massachusetts 2021 State Bills
Massachusetts 2021 S.1385
Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. 3/29/21 Referred to the Senate Committee on Public Health.

Oklahoma 2021 State Bills
Oklahoma 2021 SB 351
Other Topics, Privacy Pending

Requires a practitioner to offer to administer a pharmacogenomic test to a patient prior to the prescription of any psychotropic drug. The practitioner is required by the measure to inform the patient that pharmacogenomic tests have not been approved by the Food and Drug Administration. The practitioner must obtain the patient’s informed consent prior to ordering a pharmacogenomic test and must provide an estimate to the patient if the practitioner is aware of the cost. 2/2/2021 Second Reading. Referred to Senate Health and Human Services. Carries over to 2022. 

Louisiana 2021 State Bills
Louisiana 2021 SB 84
Health Insurance Coverage Enacted

Requires any health coverage plan renewed, delivered or issued for delivery in Louisiana to provide coverage for genetic or molecular testing for cancer including but not limited to tumor mutation testing, next generation sequencing, hereditary germline mutation testing, pharmacogenomic testing, whole exome and genome sequencing, and biomarker testing.. 6/1/21 Signed by the Governor. Becomes Act No. 43. 

New York 2021 State Bills
New York 2021 S6681
Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. 5/11/2021 Referred to Investigations and Governmental Operations. 

Alaska 2021 State Bills
Alaska 2021 HB 159
Privacy Pending

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. 

California 2021 State Bills
California 2021 SB 480
Other Topics Pending

require the Metropolitan Water District of Southern California to adopt rules relating to inappropriate conduct, as defined, by board members, officers, and employees. Inappropriate conduct is defined as any conduct toward others that is physical, verbal, or visual based on or because of various characteristics, including genetic information. 8/19/2021 Ordered to inactive file on request of Assembly Member Arambula.

Minnesota 2021 State Bills
Minnesota 2021 SF 2320
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. 

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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: August 3, 2020