Genome Statute and Legislation Database

Establishes a task force to require a study of the link between the abnormal genes associated with breast and ovarian cancers and the nerve death associated with Alzheimer's disease to improve diagnosis, risk assessment and treatment of such disease. Died.

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.

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.

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.

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.

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.

Creates a penalty for the unauthorized public photography of an individual with a genetic or medical condition. Died.

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.

Requires health_insurance_coverage for genetic cystic fibrosis screenings for women. Died.

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.

This bill amends the state genetic nondiscrimination law for employment by creating an exemption for state or local law enforcement, the department of public safety and the division of scientific services that allows those entities to request or require employees to provide genetic information for the purpose of detecting contamination of samples examined by the division of scientific services. Measure failed.

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.

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.

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.

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.

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.

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.

Prohibits discrimination based upon genetic information in the issuance or renewal of disability, long-term care, and life insurance. Died.

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.

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.

Prohibits discrimination based upon genetic characteristics and information in the issuance or renewal of disability and long term care insurance. Insurers also must provide notice if a genetic test is required. Died.

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.

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.

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.

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.

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.

Employers, employment agencies and labor organizations may not discriminate based on genetic information with some exceptions such as to investigate a workers' compensation claim. A health benefit plan or health insurer may not establish rules for the eligibility or adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or his/her family member, including information about a request for or receipt of genetic services by an individual or the individual's family member. Health insurers also may not require or request a genetic test.

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.

This bill amends Florida's health_insurance_nondiscrimination law. The bill removes the exemption for life, disability and long-term care insurance under existing law and states that the law applies to other lines of insurance. Died.

No person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity shall deny or refuse employment to any person or discharge any person from employment solely because such person has the sickle-cell trait. These entities also may not require screening or testing for the sickle-cell trait as a condition for employment.

Creates Healthy Florida Program for purpose of comprehensive universal single-payer health care coverage. The Board of the program must establish requirements and standards to promote nondiscrimination, including based on genetic information. Died.

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.

Children?s Medical Services Program; Deleting a requirement that the Department of Health consult with the Department of Education before prescribing certain newborn testing and screening requirement...

Insurers may not refuse to issue or deliver any policy of life insurance or disability insurance that affords certain services and benefits or impose a higher premium rate or charge for those policies solely because the person to be insured has the sickle-cell trait.

Enacts 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. Died.

This bill amends Florida's health_insurance_nondiscrimination law. The bill removes the exemption for life, disability and long-term care insurance under existing law and states that the law applies to other lines of insurance. Died.

An insurer that offers a group health insurance policy may not establish rules for eligibility or continued eligibility based on certain health status-related factors, including genetic information or use genetic information in the absence of a diagnosis as the basis for a pre-existing condition exclusion.

Prohibits life insurers, long-term care insurers, and disability income insurers from certain actions relating to genetic information or genetic testing of applicants. Prohibits these insurers from taking certain actions relating to coverage or rates unless certain conditions are met. Requires entities providing direct-to-consumer genetic testing to obtain prior written authorization to disclose identifying health information to life or health insurers. Died.

The bill establishes the Florida Priority Care Project. The project aims to place a higher public priority on targeting the needs of adults who have a serious mental illness and who have a history that indicates a high probability that they could pose a threat to public safety. Requirements for the project include the use of genetic testing to help establish the correct medication regimes to be used to manage and treat a client's symptoms. Died.

Health care service programs may not treat genetic information as a preexisting condition in the absence of a diagnosis. A health maintenance organization that offers group health_insurance_coverage may not establish rules for eligibility or continued eligibility of an individual to enroll under the terms of the contract based on certain health status-related factors, including genetic information.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. 3/14/2020 Died in Judiciary.

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 Health Innovation Subcommittee.

Informed consent is required to perform DNA analysis. The results of DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without express consent. A person who performs DNA analysis or receives records, results, or findings of DNA analysis must provide the person tested with notice that the analysis was performed or that the information was received.

Specifies criteria that must be met before a life insurer, long-term care insurer, or disability income insurer may use genetic information for underwriting purposes. Prohibits a life, long-term care, or disability income insurer from canceling coverage based solely on genetic information; requiring an applicant to take a genetic test as a condition of insurability; or obtaining, requesting, or otherwise requiring the complete genome sequence of an applicant�s DNA. Requires written consent for companies providing direct-to-consumer commercial genetic testing to share information about a consumer with a life insurer or health insurer. HB 1189 Substituted. Died.

Prohibits life insurers and long-term care insurers, except under certain circumstances, from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on genetic information. 3/10/2018 Died in Banking and Insurance.

Insurers offering health insurance, a self-insured plan, a multiple employer welfare arrangement, a prepaid limited health service organization, a health maintenance organization, a prepaid health clinic, a fraternal benefit society or any health care arrangement where risk is assumed may not cancel, limit, or deny coverage or establish differentials in premium rates based on genetic information in the absence of a diagnosis. Health insurers may not require or solicit genetic information, use genetic test results, or consider a person's decisions or actions relating to genetic testing for any insurance purpose.

Establishes the parent's bill of rights. Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order. 3/14/20/20 Died in Rules.

Prohibits life insurers and long-term care insurers from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on genetic information, if there is no diagnosis of a condition related to the genetic information. The bill also prohibits these insurers from requiring or soliciting genetic information, using genetic test results, or considering a person�s decisions or actions relating to genetic testing for any insurance purpose. 3/10/2018 Died in Rules.

This bill prohibits DNA analysis and disclosure of DNA analysis results without authorization; prohibits the collection or retention of a DNA sample of another person without authorization for specified purposes; prohibits specified DNA analysis and disclosure of DNA analysis results without authorization, etc.

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.