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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 ascending
Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022 session.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022 session.

Illinois Health Insurance Coverage Enacted

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden. 8/27/21 Approved by the Governor. Effective 1/1/2022.

Illinois Health Insurance Coverage Statute

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden.

New Hampshire Privacy Died

Provides that an individual has an expectation of privacy in personal information, including DNA/RNA and other identifying information unique to the individual. Died.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

West Virginia Privacy Died

Provides that all parental rights are reserved to a parent of a minor child without obstruction or interference from this state, a political subdivision of this state, other governmental entity or other institution including, but not limited to, the right to consent before DNA is created, stored or shared. Died.

Virginia Parentage law Died

Provides that
any person who knowingly gives any false information or makes any
false statements for the purpose of determining paternity is guilty
of a Class 6 felony. The bill further requires an a...

New York Health Insurance Coverage Died

Provides insurance coverage for colonoscopies for individuals 45 or older based on risk factors, including genetic history. Died.

Arkansas Privacy Statute

Provides for the protection of personal information maintained by businesses, including biometric information. Biometric information is defined to include DNA.

California Research Statute

Provides for the protection of human subjects participating in medical experiments. Enacts the Experimental Subject's Bill of Rights, which details informed consent requirements.

Louisiana Coverage and reimbursement Enacted

Provides for health_insurance_coverage of genetic testing for diseases and other medical conditions.

Utah Privacy Died

Provides consumers the right to access, correct, and delete certain personal data. Gives consumers the right to opt out of the collection and use of personal data for certain purposes. Requires certain businesses that control and process personal data of consumers to: safeguard personal data; provide clear information to consumers regarding how the consumer's personal data are used; accept consumer requests to exercise the consumer's rights under this bill; comply with a consumer's request to exercise the consumer's rights under this bill; and maintain data protection assessments. Creates a process for a consumer to submit requests and appeal a business's decision regarding the business's processing of the consumer's personal data. Allows the Division of Consumer Protection to accept and investigate consumer complaints regarding the processing of personal data. Creates a right for a consumer to know what personal information a business collects, how the business uses the personal information, and whether the business sells the personal information. Allows a consumer to require a business to delete personal information, with
exceptions, and direct a business that sells personal information to stop selling the consumer's personal information. 3/5/2021 Senate Filed. Died.

Missouri Privacy Died

Protects the privacy of student data, which encompasses biometric records. Biometric records is defined to include DNA. Died.

Missouri Privacy Died

Protects the privacy of student data, which encompasses biometric records. Biometric records is defined to include DNA. Died.

California Privacy Statute

Protects the privacy and security of computerized data, including personal information, owned or licensed by an agency. Genetic data is defined as any data that results from the analysis of a biological sample of an individual, or from another source enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from analysis of the biological sample or other source, and any information extrapolated, derived, or inferred therefrom.

Maine Privacy Enacted

Protects the personal information, including genetic information, pertaining to state employees. Signed by the Governor on June 20, 2019.

Washington Privacy Died

Protects sensitive data of consumers, including genetic data. 1/13/2020 By resolution, reintroduced and retained in present status. Died.

Vermont Other Topics, Privacy Died

Protects consumer privacy by requiring that a business that collects genetic data from a Vermont consumer to provide ancestry or similar information protects the data and keeps it confidential. Carries over to 2022.

Washington Privacy Died

Protects consumer data. Original version of bill included genetic data in the definition of sensitive information, but it was removed from the substitute bill version. 1/13/2020 By resolution, reintroduced and retained in present status. Rules Committee relieved of further consideration. Died.

Massachusetts Privacy Died

Protects biometric information under the security breach law. Biometric information includes genetic information. Died.

Vermont Privacy Died

Proposes to identify a DNA sample and the results of a DNA analysis performed on the sample as the exclusive property of the person sampled or analyzed and to provide criminal and civil penalties for unlawful DNA collection, analysis, retention, or disclosure. Died.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/13/2021 Reported Do Pass House Rules Committee. Died.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/22/2021 Voted Do Pass Senate Insurance and Banking Committee. Died.

Texas Other Topics Died

Proposes a Constitutional Amendment providing for the recognition of equal rights of all people. States that equality under the law may not be denied or abridged based on numerous factors, including genetic information. Died.

Massachusetts Other Topics Pending

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

Massachusetts Other Topics Pending

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

Delaware Research, Use of Residual Newborn Screening Specimens Enacted

Prohibits utilizing newborn screening stored blood specimens or stored data without parental consent, except for population based studies in which all identifying information is removed. Blood spots may be used within the Division of Public Health for quality assurance or performance improvement activities, including pilot studies when a new disorder is being considered for addition to the panel, or may be used by Division of Public Health for any other purpose authorized by law. Jul 15, 2015 - Signed by Governor.

Oklahoma Other Topics Died

Prohibits unlawful housing discriminatory practices based on genetic information. Died.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

North Carolina Other Topics Died

Prohibits unlawful discriminatory practice based on protected status, including genetic information. Died.

West Virginia Privacy Enacted

Prohibits the West Virginia Department of Education from transferring confidential student information, including genetic information, to any federal, state or local agency or other person or entity with some specified exceptions. Signed by the Governor 3/25/2016. Effective 90 days from passage.

Maryland Employment Nondiscrimination Enacted

Prohibits the Washington Suburban Sanitary Commission from discriminating against a person on the basis of genetic information. Requires that contracts entered into by the Commission include a provision stating that contractors will not to discriminate in any manner against an employee or an applicant for employment based on a variety of factors, including genetic information. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

Maryland Employment Nondiscrimination Statute

Prohibits the Washington Suburban Sanitary Commission from discriminating against a person on the basis of genetic information. Requires that contracts entered into by the Commission include a provision stating that contractors will not to discriminate in any manner against an employee or an applicant for employment based on a variety of factors, including genetic information.

New York Other Topics Enacted

Prohibits the state, or any agency or bureau, or any other entity from denying a refugee resettlement anywhere within the state based on any criterion, method of administration, or practice that has the purpose or effect of discriminating on the basis of various factors, including predisposing genetic characteristics. Carries over to 2022.

Vermont Privacy Died

Prohibits the state sale of personally identifiable information, including genetic information. Died.

California Other Topics Statute

Prohibits the sale of a gene therapy kit unless the seller includes a notice on the seller�s internet website to the consumer prior to the point of sale and on a label on the package stating that the kit is not for self-administration.

New York Privacy Died

Prohibits the release of personally identifiable student information, including DNA sequence, where parental consent is not provided. Died.

New Hampshire Privacy Died

Prohibits the government from acquiring, retaining, collecting, or using personal information without express written consent with some exceptions such as if a warrant has been issued. Personal information includes DNA/RNA. Died.

New York Other Topics Died

Prohibits the distribution of consumers' DNA profiles submitted to direct-to-consumer genetic testing companies. Requires companies to provide a copy of their privacy policy to any consumer that submits a DNA sample and provides for civil penalties for violations of these provisions. Died.

New Mexico Privacy Died

Prohibits the disclosure of sensitive personal information by a state agency employee acquired by virtue of the employee's position with a state agency to anyone outside the state agency except under specified circumstances. Died.

New Hampshire Privacy Died

Prohibits the collection, tracking, housing, storage, reporting or sharing of personally identifiable information with the federal government or for-profit corporations. The findings and purpose section of the bill lists a DNA sequence as private student data. Died on the Table.

Wyoming Privacy Enacted

Prohibits the collection, retention and disclosure of genetic information without informed consent. Establishes requirements for the retention and destruction of genetic information. 3/16/2018 Governor Signed HEA No. 0060.

Maine Privacy Died

Prohibits the collection, entry into an education database or maintenance of DNA by as education records by the department of education or school administrative unit. Died.

Georgia Privacy, Use of Residual Newborn Screening Specimens Died

Prohibits the collection of student or family information by any state agency, local school system or educational institution, including biometric data (defined to include DNA sequence and newborn screening information), except as may be necessary to facilitate the instruction of special needs students or students participating in school physical education and athletic programs. Died.

Alabama Privacy Died

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Alabama Privacy Died

Prohibits state agencies, local education agencies, or local education institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits certain information about the student or the family of the student, including biometric records. Biometric records are defined to include a DNA sequence. Died.

Alabama Privacy Died

Prohibits state agencies, district boards of education, or pre K-12 educational institutions from administering any student survey, assessment, analysis, evaluation, or similar instrument that solicits information about the student or the student's family concerning biometric records, which is defined to include DNA sequences. Died.

Arizona Privacy Died

Prohibits schools and school service providers from collecting or possessing biometric information of elementary or secondary school students unless the school service provider: (1) develops a written policy for the collection, retention, disclosure and destruction of biometric information; and (2) obtains a written release to collect biometric information. Sets forth protections for biometric information, if collected. Biometric information is defined as information derived from any biometric identifier used to identify an individual. Died.

Missouri Privacy Died

Prohibits school districts from collecting biometric information, including DNA sequences, on students without the express written consent of parents or legal guardians. 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