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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 Sort descending Summary
Tennessee Privacy Died

Prohibits a direct-to-consumer genetic testing business entity from sharing personally identifiable genetic test data or other personally identifiable information about a consumer with a third party without the express written consent of the consumer or a subpoena or court order. Died.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

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 Health Insurance Coverage Died

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

Mississippi Health Insurance Nondiscrimination Died

Creates the small business health insurance pool. Health benefit plans covering small employers may not use genetic information to establish a pre-existing condition exclusion in the absence of a diagnosis of a condition related to the genetic information. 2/23/2016 (H) Died In Committee.

New Jersey Other Topics Died

Requires testing of infants for genetic mutations associated with the development of hereditary hemochromatosis. Died.

New York Health Insurance Coverage Died

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

Oklahoma Health Insurance Coverage Died

This bill requires individual and group health insurers that provide coverage on an expense-incurred basis to provide reimbursement not to exceed $115 for mammography screening any female under 35 with a genetic predisposition to breast cancer. Measure failed.

Vermont Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual�s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended. Died.

Massachusetts Privacy Died

Prohibits a public agency or public official from: (1) acquiring, possessing, accessing, using, or assisting with the use of or provide resources for the development or use of any biometric surveillance system, or (2) entering into a contract with or making a request to any third party for the purpose of acquiring, possessing, accessing or using information derived from a biometric surveillance system, unless expressly authorized by law. Biometric data is defined to include deoxyribonucleic acid. Died.

Missouri Health Insurance Nondiscrimination Died

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

New Jersey Health Insurance Coverage Died

Requires a hospital service corporation that provides hospital or medical expense benefits to provide coverage for screening to determine whether genetic counseling related to the BRCA1 or BRCA2 genetic mutations is indicated; genetic counseling; and if indicated, BRCA testing. Died.

New York Other Topics Died

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling. Participation in the program is voluntary, and all information is confidential. Died.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Virginia Employment Nondiscrimination Died

Requires each legislative branch agency to adopt and implement the Commonwealth Workplace Harassment Policy established by the Department of Human Resource Management. Workplace harassment is defined to include harassment based on genetic information. Died.

California Health Insurance Coverage Died

A health insurance policy that is issued, amended, or renewed on or after January 1, 2022, may not apply a deductible, copayment, or coinsurance to coverage for screening services for prostate cancer for an insured who meets certain criteria. A person is 40 years of age or older and who is high risk, as determined by the attending or treating health care provider meets the criteria. High risk includes, but is not limited to, a person with a prostate who is Black, has a family history of prostate cancer, has a genetic predisposition to prostate cancer, or is a veteran. Carries over to 2022.

Hawaii Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Died

The bill requires contractors and prospective contractors with the state or counties to comply with the Genetic Information Nondiscrimination Act of 2008. Died.

Maine Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

In the absence of a medical diagnosis of a disease, disorder or syndrome related to genetic information, a health insurer, life insurer or long-term care insurer may not cancel, limit or deny coverage or establish differentials in premium rates based on such genetic information. A health insurer, life insurer or long-term care insurer may not request, require, purchase or otherwise solicit genetic information; use genetic test results; or consider an individual's decisions or actions relating to genetic testing in any manner for any insurance purpose. 6/10/2021 Reports Read. On motion by Senator Sanborn of Cumberland the Majority Ought Not to Pass. Report accepted. In concurrence. Placed in Legislative Files. Died.

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.

Minnesota Privacy Died

Modifies existing law pertaining to the use of genetic information by government entities and enacts a new consumer protection law regarding the use of genetic information. Died.

New Hampshire Privacy Died

This bill restricts the collection of biometric data, including DNA or RNA, by state agencies, municipalities, and political subdivisions. Died.

New York Health Insurance Nondiscrimination Died

his bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. 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