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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
New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Research Died

Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19.

Tennessee Privacy Died

Allows the recipient of an organ transplant and referral hospital to examine all genetic records of the donor or prospective donor unless prohibited by any other law. Died.

West Virginia Privacy Died

Creates a Longitudinal Data System, which links child care, student and workforce unit record data, and governing board of the system. The governing board must prohibit the collection of confidential information, which includes genetic information. Died.

Alabama Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

Prohibits health benefit plans, life insurers, and long term care insurers from (1) using an individual's genetic information to deny him or her insurance or to establish differentials in premium rates, or (2) requiring or soliciting genetic information, using genetic test results, or considering an individual's decisions or actions relating to genetic testing in any manner for insurance purposes. Died.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Indiana Research, Use of Residual Newborn Screening Specimens Died

Amends the state's newborn screening statute. The bill requires consent to release newborn's residual blood specimen for epidemiological survey and research. Died.

Maryland Privacy Died

Requires certain state and local governmental units to secure by encryption personal information of an individual that the unit has collected as computerized data. Personal information includes a genetic print or image. Died.

Massachusetts Other Topics Died

Pertains to municipal master plans. Master plans developed should take into account to the extent feasible ways in which future policies and programs can advance equity based on various factors such as genetic information. Died.

Mississippi Privacy Died

Allows parents to opt out of certain activities conducted by the public school districts, including the collection of biometric information. Biometric information is defined to include DNA. 2/23/2016 (S) Died In Committee.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New York Health Insurance Coverage Died

The bill requires accident and health insurance policies to cover the cost of genetic testing for people with a family history of cancer when the attending physician determines the person has a significant risk of cancer. Died.

Oklahoma Privacy Died

This bill prohibits collection or retention of biometric data in connection with motor vehicle registration or operation, the issuance or renewal of driver licenses or the issuance or renewal of any identification cards by any department or agency of this state charged with those activities. Died.

Virginia Health Insurance Nondiscrimination Died

This bill prohibits the establishment of rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, in Virginia share health insurance policies. This bill also prohibits pre-existing condition exclusions in these policies based on genetic information in the absence of a diagnosis of a condition related to such information. Measure failed.

Colorado Privacy, Research Died

Establishes a parental bill of rights. Requirements include parental consent in writing before any record of a minor child's blood or DNA is made, shared, or stored, unless such blood or DNA is otherwise required by law or court order. Died.

Idaho Health Insurance Nondiscrimination Died

The bill amends the state genetic nondiscrimination law by prohibiting discrimination on the basis of genetic information or a genetic test in the issuance of coverage, or the fixing of rates, terms or conditions, for any policy or contract of hospital or medical insurance or any health benefit plan. Measure failed.

Maryland Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill repeals an exemption for disability insurance under the state genetic nondiscrimination law and amends the definition of genetic information used in the health_insurance_nondiscrimination law. Measure failed.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Minnesota Privacy Died

Businesses must conduct risk assessments of processing activities that involve sensitive consumer data, including genetic data. Died.

New Hampshire Privacy Died

Declares that an individual's genetic information and DNA sample are the property of the individual. Committee Report: Referred to Interim Study, 05/05/2016.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits discrimination based on genetic characteristics in life and disability insurance. 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.

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.

Wisconsin Employment Nondiscrimination Died

Permits the Department of Workforce Development (DWD) or a person who has been discriminated against or subjected to unfair honesty or genetic testing to bring an action in circuit court to recover compensatory and punitive damages caused by the act of discrimination or unfair honesty or genetic testing after the completion of all administrative proceedings before DWD and the Labor and Industry Review Commission concerning the violation. Failed to pass pursuant to Senate Joint Resolution 1.

Arizona Other Topics Died

Prohibits placing an inmate in isolated confinement based on certain factors, including genetic information. Died.

Florida Health Insurance Nondiscrimination Died

Creates the Healthy Florida program to be administered by the Healthy Florida Board. Every resident of Florida is eligible and entitled to enroll under the Healthy Florida program. The program may not discriminate based on genetic information. 3/10/2018 Died in Banking and Insurance.

Kentucky Health Insurance Nondiscrimination, Privacy Died

This bill prohibits the adjustment of premium or contribution amounts based on genetic information; prohibits an insurer from requesting or requiring a genetic test of a member unless made pursuant to the Common Rule, equivalent federal regulations or any applicable administrative regulation for the protection of human subjects in research; prohibits the use of genetic information for underwriting purposes; prohibits the request, requirement, or purchase of genetic information by an insurer prior to an individual's enrollment under a plan; precludes insurers from requiring genetic information for eligibility for health insurance in the individual market; and prohibits the use of genetic information for the purpose of imposing any pre-existing condition exclusion. Measure failed.

Maryland Other Topics Died

A hospital or related institution may not discriminate in admitting or providing personal care based on genetic information. Died.

Massachusetts Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity. Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles. Biometric data is defined to include deoxyribonucleic acid. 7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

New Jersey Other Topics Died

Prohibits discrimination in health programs or activities based on certain factors, including genetic information. Died.

New York Employment Nondiscrimination Died

Prohibits clients and modeling agencies from subjecting a model to harassment based on various characteristics, including predisposing genetic characteristics, where such harassment has the purpose or effect of unreasonably interfering with an individual's provision of modeling services by creating an intimidating, hostile, or offensive environment. Died.

Rhode Island Privacy Died

Enacts the Consumer Protection privacy Act. Establishes consumer protections pertaining to the collection and use of personal information, including an individual's DNA, by businesses. Died.

Virginia Employment Nondiscrimination Died

Requires the legislative branch of the Commonwealth to develop a policy on workplace harassment. Workplace harassment is defined as any unwelcome verbal, written, or physical conduct that either denigrates or shows hostility or aversion toward a person on the basis of various factors, including genetics. Died.

Missouri Research, Use of Residual Newborn Screening Specimens Died

Amends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.

New Mexico Health Insurance Coverage Died

An individual or group health insurance policy, health care plan or certificate of health insurance that is delivered or issued for delivery in New Mexico must provide certain benefits that have, in effect, a rating of "A" or "B" in the current recommendations of the United States preventive services task force, for various services, including genetic counseling and evaluation for breast cancer BRCA-gene testing for women whose family histories are associated with an increased risk for deleterious mutations in BRCA1 or BRCA2 genes. Died in Committee.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

South Dakota Health Insurance Coverage Died

Every policy of group or individual health insurance, each service or indemnity-type contract issued by a nonprofit medical or surgical service plan corporation and each health maintenance contract that covers a female, that is delivered, issued for delivery, or renewed in South Dakota, and that provides coverage for occult breast cancer screening must provide additional benefits for (1) comprehensive ultrasound screening if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if a woman is believed to be at an 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; and (2) magnetic resonance imaging in accordance with guidelines established by the American Cancer Society or the American College of Radiology or if a woman is believed to be at an 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. Died.

Washington Other Topics Died

Creates a study committee on human genome editing. Died.

Connecticut Privacy Died

Requires businesses to disclose the proposed use of any personal information and to give consumers the right to discover what personal information the business possesses. Consumers may opt out of the sale of such information. Personal information is defined to include biometric information such as DNA which can be used to identify an individual. 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, Privacy Died

Permits a health insurance carrier to make available upon request an upgrade to a biometric health care identification card that can securely validate one's identity and access his or her medical history. Biometric identification is defined to include DNA. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. Died.

Mississippi Health Insurance Nondiscrimination Died

This bill prohibits group health benefit plans from imposing pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Measure failed.

New Jersey Employment Nondiscrimination Died

This bill prohibits employers from (1) seeking to obtain or use a genetic test or genetic information, (2) requiring a genetic test or genetic information, (3) accessing or requesting or requiring consent to access genetic information, (4) requesting or requiring a genetic test from an individual or family member, or (5) inquiring about whether an individual or family member has taken or refused to take a genetic test. Civil penalties are set forth for violations. Measure failed.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

North Carolina Other Topics Died

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

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.

Wisconsin Privacy Died

Requires controllers of consumers' personal data to provide a consumer with copies of the consumer's personal data processed by the controller. Personal data includes genetic information. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

California Health Insurance Coverage Died

Requires a health care service plan contract or a health insurance policy that is issued, amended, or renewed on or after January 1, 2015, to provide coverage for genetic testing for Lynch syndrome. 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