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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
Colorado Health Insurance Coverage Enacted

This bill amends existing statutes pertaining to mammography coverage for persons with a predisposition to breast cancer by amending provisions related to copayments and deductibles and the frequency of mammography coverage requirements (breast cancer screening with mammography required annually.) Signed by the Governor on May 13, 2013.

Colorado Other Topics Enacted

Prohibits direct primary health care providers from discriminating in the selection of patients on the basis of genetic information and other protected classes. 4/24/2017 Signed Act.

Colorado Health Insurance Coverage Enacted

Amends the provision requiring health_insurance_coverage for mammography for an individual with a genetic predisposition. The amended version of the statute refers to guidelines of professional associations to determine coverage requirements. May 16, 2019 Signed by the Governor.

Colorado Privacy Enacted

Creates the Colorado privacy Act. Prohibits the processing of a consumer's sensitive data without first obtaining the consumer's consent. Sensitive data includes genetic or biometric that may be processed for the purpose of uniquely identifying an individual. 7/7/2021 Governor signed. Effective July 1, 2024.

Connecticut Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements 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. June 2, 2016 Approved. Effective January 1, 2017.

Connecticut Research, Use of Residual Newborn Screening Specimens Enacted

Requires that all research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the health commissioner. 6/23/2017 Signed by the Governor. Effective 10/1/2017.

Connecticut Other Topics Enacted

Creates a health data collaborative working group to examine and make recommendations regarding (1) precision medicine and personalized health; (2) economic growth initiatives for businesses working in certain scientific areas; (3) health data access, privacy and security initiatives; and (4) platforms for collecting health data in order to understand the interplay between genetic, behavioral and environmental factors in the incidence of disease or illness. 6/30/2017 Signed by the Governor. Effective immediately.

Connecticut Privacy Enacted

Creates a task for concerning consumer privacy. The introduced version of the bill was amended to create a task force rather than set forth certain requirements pertaining to the privacy of personal information such as DNA. Signed by the Governor 7/9/2019.

Connecticut Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record. 7/7/2021 Signed by the Governor. Effective October 1, 2021.

Delaware Health Insurance Nondiscrimination Enacted

Prohibits group health insurers from establishing rules for eligibility of an individual to enroll based on a health status related factor of individuals, including genetic information. Prohibits individual health insurers from establishing rules for eligibility of an individual to enroll under the terms of the coverage based on health status-related factors, including genetic information. Signed by the Governor on July 15, 2013.

Delaware Privacy Enacted

This bill addresses informed consent for disclosing genetic information by adding those individuals authorized to access EMR and DHIN. Signed by the Governor on 7/27/2015.

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.

Delaware Privacy Enacted

Establishes protections for personal information, including a deoxyribonucleic profiles, owned, maintained, or licensed by businesses in the state. Businesses must implement and maintain reasonable procedures and practices to prevent the unauthorized access to or acquisition, use, modification, disclosure, or destruction of personal information collected or maintained in the regular course of business. 8/17/2017 Signed by the Governor. Effective 4/14/2018.

Delaware Research, Use of Residual Newborn Screening Specimens Enacted

Amends the provision pertaining to use of stored blood specimens. Removes language permitting the Division of Public Health use of specimens for (1) quality assurance or performance improvement activities, including pilot studies, when a new disorder is being considered for addition to the panel; or (2) any other purpose authorized by law. research use in population based studies of de-identified specimens is permitted with parental consent. However, an amendment to the existing statute requires the destruction of blood specimens after screening and testing are complete. Signed by the Governor on 9/15/2021. Effective upon Governor's signature.

Florida Other Lines of Insurance Nondiscrimination, Privacy Enacted

Amends the state insurance law pertaining to the use of genetic information. Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose. 6/30/2020 Approved by the Governor. Effective 7/1/2020.

Florida Privacy Enacted

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 6/29/21 Approved by the Governor. Effective 7/1/2021.

Florida Privacy, Research Enacted

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021.

Georgia Genetic Data & Law Enforcement Enacted

Relating to determination of paternity, so as to align evidentiary medical and genetic testing with the Uniform Parentage Act of 2017.

Georgia Health Insurance Coverage Enacted

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. Act 587 Effective 1/1/2021.

Idaho Other Topics Enacted

If a firefighter is diagnosed with breast cancer after a five years of employment, and the disease was not revealed during an initial employment medical screening examination, then the disease is presumed to be proximately caused by the firefighter's employment as a firefighter. The presumption applies to breast cancer diagnosed before the age of forty (40) years and when a breast cancer 1 or breast cancer 2 genetic predisposition is not present. Signed by Governor on March 30, 2016. Effective: 07/01/2016.

Illinois Health Insurance Coverage Enacted

This bill requires coverage for a mammogram at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. This bill also requires coverage for a comprehensive ultrasound screening of an entire breast or breasts 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 the woman is 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 health care provider. Signed by the Governor August 24, 2007.

Illinois Employment Nondiscrimination, Privacy Enacted

This bill amends the Genetic Information privacy Act. The bill adds and amends definitions under the law, makes changes to the employment provisions, adds requirements to be consistent with federal laws such as GINA, and further specifies prohibited actions by covered entities. Monetary penalties are increased, and a private right of action is afforded to any person alleging a violation of the law. The bill allows local governments to enact genetic privacy measures equal to or greater than the protections provided under state law. Approved by the Governor August 26, 2008.

Illinois Privacy Enacted

Amends the Genetic Information privacy Act to add a provision related to electronic health records. The bill states that the disclosure of genetic information, when allowed, must be performed in accordance with the minimum necessary standard when required under HIPAA. Approved by the Governor August 25, 2014.

Illinois Health Insurance Coverage Enacted

Adds tomosynthesis to health_insurance_coverage requirements for women at increased risk of breast cancer because of positive genetic testing. 8/19/2015 Signed By the Governor.

Illinois Employment Nondiscrimination, Privacy Enacted

Amends the state genetic nondiscrimination law for employment. An employer may not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information. 8/25/2017 Approved by the Governor. Effective 1/1/2018.

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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