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.
State Sort descending | Primary Link | Topic(s) | Bill Status | Summary |
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Connecticut | State StatuteConnecticut CGA 19a 53 | Use of Residual Newborn Screening Specimens | Statute | The Health Commissioner must review and approve research proposals to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals. |
Connecticut | 2019 State Bills Connecticut 2019 SB 1108 | 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 | 2017 State Bills Connecticut 2017 SB 586 | Health Insurance Coverage | Died | Requires individual and group health insurers to provide coverage for breast cancer chemoprevention counseling, risk assessment, genetic testing and counseling for any woman who is at increased risk for breast cancer due to family history, prior personal history of breast cancer, positive genetic testing or other indications as determined by a health care provider. Died. |
Connecticut | State StatuteConnecticut CGA 38a 503 et seq. | Health Insurance Coverage | Statute | The statute provides coverage of specified services for women who meet the age requirements set forth in the statute. If a woman is believed to be at increased risk for breast cancer due to 1) family history or prior personal history of breast cancer or 2) positive genetic testing or other indications as determined by a woman's physician advanced practice registered nurse, individual and group health insurers must provide a mammogram, which may be provided by breast tomosynthesis at the option of the woman covered under the policy, and comprehensive ultrasound screening of an entire breast or breasts. Ultrasound screening is provided only 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. |
Connecticut | 2021 State Bills Connecticut 2021 SB 841 | 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. |
Connecticut | 2018 State Bills Connecticut 2018 SB 440 | Health Insurance Coverage | Died | The Commissioner of Social Services must provide Medicaid coverage to the extent permissible under federal law for pharmacogenomics tests determined to be medically necessary. The commissioner may not require prior authorization for medically necessary pharmacogenomics tests for persons being treated for (1) behavioral disorders, (2) psychiatry disorders, (3) cardiovascular disorders, and (4) chronic pain. Died. |
Connecticut | State StatuteConnecticut: CGA 38 1 et seq. | Other Lines of Insurance Nondiscrimination | Statute | 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. |
Connecticut | 2019 State Bills Connecticut 2019 HB 6544 | Privacy | Died | Prohibits a consumer genetic-testing company from sharing any genetic data or other personally identifiable information about a consumer with any health or life insurance company. Died. |
Connecticut | State StatuteConnecticut: CGA 38a 999 | Privacy | Statute | An insurance institution, agent or insurance support organization that collects, uses or discloses medical record information must have written policies, standards and procedures for the management, transfer and security of medical record information, including additional protection against unauthorized disclosure of sensitive health information such as information regarding genetic testing and the fact that an individual has undergone a genetic test. |
Connecticut | 2019 State Bills Connecticut 2019 HB 7262 | Other Lines of Insurance Nondiscrimination | Died | Prohibits life insurance companies from requiring genetic testing or using genetic information in connection with life insurance policies and annuity contracts. Died. |
Connecticut | State StatuteConnecticut: CGA 38a 476 and 816 | Health Insurance Nondiscrimination | Statute | Any hospital and medical expense incurred policy, hospital or medical service plan contract and health care center subscriber contract providing individual or group health_insurance_coverage may not refuse to insure, continue to insure, limit coverage, or charge an individual a different rate because of genetic information. In this type of coverage and all health insurance plans pre-existing condition exclusions may not be based on genetic information in the absence of a diagnosis. |
Delaware | 2015 State Bills Delaware 2015 SB 58 | 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 | 2017 State Bills Delaware 2017 HS 1 for HB 180 | 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 | 2021 State Bills Delaware 2021 HB 184 | 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. |
Delaware | State StatuteDelaware: Del. Code 16 1201 et seq. | Privacy, Research | Statute | Informed consent is required to obtain or retain genetic information about an individual. Exemptions include anonymous research where the identity of the subject will not be released. A sample from which genetic information has been obtained must be promptly destroyed with certain exceptions, including retention for anonymous research. An individual may inspect, request correction of and obtain genetic information from the records of that individual. The law sets forth civil penalties for violations. |
Delaware | State StatuteDelaware: Del. Code 18 2317 | Health Insurance Nondiscrimination | Statute | Discrimination is prohibited in the issuance, denial or renewal of or in the fixing of the rates, terms or conditions for health insurance, excluding disability or long-term care insurance. The law provides for a cause of action in the nature of defamation, invasion of privacy or negligence with some exceptions. |
Delaware | State StatuteDelaware: Del. Code 18 3571M, 3572, 3602, 3611, and 7202 | Health Insurance Nondiscrimination | Statute | A health status-related factor is defined to include genetic information with respect to large group health plans, individual health plans and small employer health insurance. Group health insurers may not establish rules for eligibility of an individual to enroll based on a health status related factor. Individual health insurers may not establish rules for eligibility of an individual to enroll under the terms of the coverage based on a health status-related factor. |
Delaware | 2021 State Bills Delaware 2021 HB 262 | Privacy | Pending | Seeks to provide consumers with critical information about how their personal information is being used by data brokers. Data brokers must register with the Consumer Protection Unit of the Department of Justice and answer questions regarding their use of personal information that would be published online to inform consumers. Data brokers are required annually to complete an electronic form designated by the Director of Consumer Protection. Data brokers must report on the form the types of consumer data, including genetic data, collected directly from consumers and from consumers� devices. Carries over to 2022. |
Delaware | State StatuteDelaware: Del. Code 19 710 et seq. | Employment Nondiscrimination | Statute | Employers, employment agencies, labor organization or joint labor-management committee controlling apprenticeships or other training may not discriminate based on genetic information. These entities may admit or employ any individual on the basis of genetic information in those certain instances where genetic information is a bona fide occupational qualification reasonably necessary to the normal operation of that particular business or enterprise. Enforcement provisions, processes for civil action by the Attorney General or charging party, judicial remedies and civil penalties are established. |
Delaware | State StatuteDelaware: Del. Code 801C | Use of Residual Newborn Screening Specimens | Statute | Prohibits research utilizing stored blood specimens or the stored data without parental consent, except for population-based studies in which all identifying information is removed. Parents may elect not to participate in blood spot storage. |
Delaware | 2015 State Bills Delaware 2015 SB 68 | Privacy | Died | Restricts the use of a child's personally identifiable information, including DNA and other genetic material, by the operator of an internet service. Substitute bill passed by House and Senate, but substitute bill does not include language regarding DNA and genetic information. Substituted bill was signed by the Governor. |
Delaware | 2015 State Bills Delaware 2015 SB 79 | Privacy | Died | Requires the Department of Education to promulgate rules and regulations relating to the privacy and protection of student data, including DNA or other genetic material. Senate Substitute Version passed in House and Senate -- DNA or other genetic information is replaced by biometric information. The term biometric information is not defined. Substituted bill was signed by the Governor. |
Delaware | 2013 State Bills Delaware 2013 HB 162 | 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 | 2019 State Bills Delaware 2019 SB 144 | Other Lines of Insurance Nondiscrimination | Died | Prohibits discrimination based upon genetic information in the issuance or renewal of disability, long-term care, and life insurance. Died. |
Delaware | 2015 State Bills Delaware 2015 SB 151 | 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. |
Last updated: February 8, 2024