Genome Statute and Legislation Database

Genetic information the property of the individual, and written consent is required for its disclosure other than for diagnosis, treatment or therapy. Health care entities may not retain or use genetic information for non-therapeutic purposes or request or require a genetic test; however, test results may be used on a limited basis to make payment decisions. Exceptions under the law include the use of genetic information for scientific research if the identity of the individual to whom the genetic information pertains is not disclosed to a third party other than the individuals physician with written consent. The law provides remedies for individuals whose rights are violated.

This section of the law is applicable to all insurance companies. A person who creates, stores, receives or furnishes genetic information must hold such information as confidential medical records and must obtain written authorization to disclose genetic information. Exceptions include statistical data compiled without reference to the identity of an individual, health research conducted in accordance with the provisions of the federal Common Rule, and health research using medical archives or databases in which the identity of individuals is protected from disclosure by coding or encryption, or by removing all identities. The director of insurance has the authority to enforce these provisions.

An accident and health insurer providing hospital, medical and surgical, or major medical coverage on an expense incurred basis, providing a corporate health services plan, or providing a health care plan for health care services by a health maintenance organization may not (1) terminate, restrict, limit, or otherwise apply conditions to coverage or restrict the sale to an individual, (2) cancel or refuse to renew the coverage of an individual, (3) exclude an individual from coverage, (4) impose a waiting period, (5) impose a pre-existing condition exclusion; (6) require inclusion of a rider that excludes coverage for certain benefits and services, or (7) adjust premium contribution amounts or establish differential in premium rates for coverage based on genetic information or a request for genetic services. Additional provisions address consent to disclose genetic information and consent to perform genetic testing. An aggrieved individual may bring civil action. he penalties and enforcement provisions of subsections (A) and (B) are in addition to penalties and enforcement provisions of federal law, including those set forth in the Genetic Information Nondiscrimination Act of 2008.

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

Individual and group health insurers, health maintenance organizations and the Illinois Department of Healthcare and Family Services (for eligible individuals) must provide coverage for a mammogram and a screening MRI 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. Coverage for a comprehensive ultrasound screening of an entire breast or breasts also is required 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.

Insurers, nonprofit health service plans and health maintenance organizations, may seek verification from health care providers that offer wellness programs about health factors that make it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Health factors are defined to include genetic information.

A health benefit plan that is offered by a carrier or an approved health plan offered to a small employer and plans subject to the Health Insurance Portability Act may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A group health plan and a health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based a health status-related factor, including genetic information. A group health benefits plan or a health insurance issuer that offers group health_insurance_coverage in connection with a group health benefits plan from adjusting premiums or contribution amounts for the group covered under the plan on the basis of genetic information. Under the Small Group Rate and Renewability Act, provisions allowing a carrier to use health status in establishing the amount an employer may be charged for coverage under a group health plan exclude genetic information from the definition of health status.

A health care provider, an individual who assists a health care provider in the delivery of health care, or an agent and employee of a health care provider may not disclose health care information, including a patient's deoxyribonucleic acid and identified sequence of chemical base pairs, about a patient to any other person without the patient's written authorization. A health care provider may disclose health care information to researchers if the health care provider or health care facility obtains the informed consent for the use of the patient's health care information for research purposes.

No insurance company may refuse to issue or deliver any policy of life insurance solely by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A policy also may not carry a higher premium rate or charge by reason of the fact that the person to be insured possesses these traits.

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.

Requires health benefit plans to cover any genetic test for cancer risk recommended by a physician, physician's assistant, genetic counselor or nurse if the recommendation is consistent with genetic testing guidelines of the National Comprehensive Cancer Network.

A health benefit plan may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health carrier may not establish rules for eligibility and continued eligibility of any individual to enroll under the terms of the health benefit plan based on a health status-related factor, including genetic information.

It is an unlawful employment practice if an employer, labor organization, or employment agency discriminates against an individual on the basis of genetic information or refusal to submit to a genetic test. An employer, labor organization, or employment agency commits an unlawful employment practice if these entities limit, segregate, or classify an employee, member, or applicant in a way that would deprive or tend to deprive the employee, member, or applicant of employment opportunities or otherwise adversely affect the status of his or her status on the basis of genetic information or the refusal to submit to a genetic test.

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.

An insurer, agent or broker authorized to issue life insurance policies, policies against disability from injury or disease or policies for long-term care may not practice unfair discrimination because of the results of a genetic test or the provision of genetic information or require an applicant to undergo a genetic test as a condition of issuance or renewal of a policy. Unfair discrimination involves discriminatory practices against persons unless such action is based on reliable information relating to the insureds mortality or morbidity and based on sound actuarial principles or actual or reasonably anticipated claim experience. These insurers may ask if an applicant has taken a genetic test.

During the period in which residual newborn screening specimens is retained, the health department may use blood samples and test results for newborn screening program operations. Newborn screening operations are defined to specifically exclude research, public health studies, or the development of new newborn screening tests.

A person who maintains genetic information may not be compelled to disclose the information except under specified circumstances.

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.

The Insurance Information and privacy Protection Act defines health care information to include information about individual cells or their components or genetic information.

A health insurer in connection with providing health insurance may not (1) require or request an individual or family member to undergo genetic testing, whether a test was taken or the results of the testing, (2) condition the provision of health_insurance_coverage or health care benefits on whether an individual or family member has undergone genetic testing or the results of the testing, or (3) consider in the determination of rates or any other aspect of health_insurance_coverage or benefits whether an individual or family member has undergone genetic testing or the results of the testing. The statutes establish a right to civil action by aggrieved individuals.

It is an unfair method of competition or unfair and deceptive act or practice to (1) make or permit any unfair discrimination against any individual by conditioning insurance rates, the provision or renewal of insurance coverage, or other conditions of insurance based on the results of genetic testing where there is not a relationship between the information and the cost of the insurance risk that the insurer would assume by insuring the proposed insured or (2) to violate the Title 18 � 9334.

Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements.

Genetic information is the property of the individual to whom it pertains. Release of genetic information that identifies the person tested for purposes other than diagnosis, treatment and therapy requires specific written consent. Exemptions under the law include some uses by research facilities. researchers may use genetic testing information for scientific research as long as the identity of any individual to whom the information pertains is not disclosed to any third party except that the individuals identity may be disclosed to the individuals physician with written consent. Group disability or long-term care insurers that receive genetic information may not seek, use or keep the information for any non-therapeutic or underwriting purpose. Life insurers and individual disability insurers may not perform a genetic test without informed consent. Penalties are set forth for unfair trade practices with respect to group disability and long-term care insurance.

A health insurance issuer offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility of any individual to enroll under the terms of the group health plan based on health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A small employer carrier may apply reasonable criteria in determining whether to accept a small employer into a class of business, provided that the criteria are not based on a health status-related factor, including genetic information.

Informed written consent consisting of the information specified in the statute is required prior to ordering a predictive genetic test. The person to be tested must receive a signed copy of the form, which also must be placed in the medical record. Tests performed per a court order or for a criminal investigation are exempt.

Accountable health plans may not (1) deny, limit or condition coverage or benefits based on health status-related factors, including genetic information or (2) impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

An insurer must comply with the provisions of the Genetic Information privacy Act in connection with the amendment, delivery, issuance, or renewal of, or claims for or denial of coverage under, an individual or group policy of accident and health insurance. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis of the condition under the Illinois Health Insurance Portability and Accountability Act.

Long-term care insurers may not request or require a genetic test to deny or limit the amount, extent, or kind of coverage available; charge a different rate for the same coverage; or use a genetic test, the results of a genetic test, genetic information or a request for genetic services to deny or limit the amount, extent, or kind of coverage available or charge a different rate for the same insurance except that the results of a genetic test may be used for these purposes based on sound actuarial principles.

The law safeguards the rights and welfare of individual human subjects in the conduct of human research projects and provides protections against the possible conduct of medical or psychological research without voluntary informed consent.

The Department of Education must prohibit the collection of confidential student information, including genetic information. The Department may not transfer student or redacted data that is confidential except under specified circumstances.

A health benefit plan, health maintenance organization or multiple employer welfare arrangement may not raise the premium or contribution rates paid for a group health benefit plan, refuse to issue or deliver a health benefit plan, or charge a higher premium rate or charge because of genetic information. Health benefit plans must comply with all applicable standards of the federal Genetic Information Nondiscrimination Act. Insurers providing accident and sickness policies or hospital, medical, or dental health service may not refuse to issue or deliver any policy that affords benefits or coverage for any medical treatment or service authorized or permitted by specified entities or carry a higher premium rate or charge by reason of the fact that the person to be insured possesses sickle cell trait or hemoglobin C trait. A group health insurer may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information, or treat genetic information as a pre-existing condition in the absence of a diagnosis. An individual health insurer may not increase an individual's renewal premium for continued health_insurance_coverage based on a health statusrelated factors, including genetic information. A sponsoring association of an employee welfare benefit program may not condition eligibility for coverage, including continuing eligibility for coverage, on health status related factors such as genetic information.

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.

Public agencies and nonaffiliated third parties must implement, maintain, and update security procedures and practices to safeguard personal information, including a biometric or genetic print.

In order for a company to be eligible for the wage benefit credit or the investment tax credit under the Invest Nebraska Act, the company must file an application for an agreement with the board, which must contain a copy of the written policy of the company prohibiting the company, as required by law, from requiring as a condition of employment or promotion at the project that an employee or an individual applying for employment at the project submit to a genetic test or provide genetic information outside of the scope of normal blood testing.

The Texas Workforce Commission collects and reports on complaints of employment discrimination, including those related to the use of genetic information.

Prohibits any person or other entity whose business includes performing appraisals of residential real property from discriminating against any person in making available those services, or in the performance of those services, because of various characteristics, including genetic information. Requires every contract for the sale of real property to contain a notice regarding improper or illegal considerations such as genetic information in appraisal of property.

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis under the definitions for chapter 176M on nongroup health plans and 176J on small group health insurance.

An issuer of a Medicare supplement contract must adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008 (Public Law 110-233).

The health commissioner may collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection of human subjects in Code of Federal Regulations, title 45, part 46. Biological specimens is defined as tissue, fluids, excretions, or secretions that contain human DNA originating from an identifiable individual, either living or deceased.

The statutes related to research apply to genetic research studies approved by an institutional review board as defined in 21 CFR, � 50 or conducted subject to the requirements of the federal common rule at 21 CFR, � 50 and � 56, and 45 CFR, � 46. research records are confidential and may not be disclosed to employers or health insurers without informed consent. The provision does not apply to an insurer or to an individual dealing with an insurer in the course of underwriting, conducting or administering life, disability income or long-term care insurance. Stored tissues, including blood, that arise from surgery, other diagnostic or therapeutic steps, or autopsy may be disclosed for genetic or other research studies with informed consent. Results of genetic research studies may be published if no individual subject is identified.

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.

An individual, group and blanket medical insurance contract subject to chapters 33 and 35 of Title 24A (with some exceptions) may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis. Group medical insurance contracts subject to chapter 35 of Title 24A (with some exceptions) may not establish rules for eligibility of an individual to enroll or require an individual to pay a premium or contribution that is greater than that for a similarly situated individual, based on genetic information.

A person in the business of providing life, disability income, or long-term care insurance who obtains information about genetic testing of an individual or a family member may not use that information in writing a type of insurance coverage other than life, disability income, or long-term care insurance. An aggrieved individual may bring a civil action.

Requires (1) the State Court Administrator for the Judicial Branch; (2)the Director of Information Technology for the Legislative Branch; and (3) the Chief Data Officer within the Agency of Digital Services and the Chief Records Officer within the Office of the Secretary of State for the Executive Branch to conduct a data privacy inventory for their respective branches of government. The inventory must address the collection and management of personally identifiable information, including genetic information. Requires a report to the legislature on or before January 15, 2021.

Prohibits direct primary health care providers from discriminating in the selection of patients on the basis of genetic information and other protected classes.

Unfair discrimination between individuals of the same class and equal expectation of life in any contract of life insurance or of life annuity is prohibited. Unfair discrimination between individuals of the same class and of essentially the same hazard for disability insurance is prohibited. An insurer may not refuse to consider an application for life or disability insurance on the basis of a genetic condition. The rejection of an application or the determining of rates, terms, or conditions of a life or disability insurance contract is permissible if the applicant's medical condition and history as well as either claims experience or actuarial projections establish that substantial differences in claims are likely to result from the genetic condition.

A health carrier, long-term care insurer or life insurer from requiring or requesting an individual or his/her blood relative to take a genetic test or consider the fact that a genetic test was refused in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision in connection with the offer, sale, or renewal of health insurance. The insurance director may promulgate rules concerning genetic information and group health benefit plans. In individual, group and blanket health insurance plans, genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. Small employer carriers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted.

Life and disability insurers (disability insurance is defined in the statutes to include health insurers) may not refuse to consider an application on the basis of a genetic condition. Information about a genetic condition may not be used for underwriting or ratemaking of life and disability insurance policies unless supported by the applicants medical condition, medical history and either claims experience or actuarial projections. In the case of disability insurance the use of information about a genetic condition for underwriting or ratemaking purposes constitutes unfair discrimination in the absence of a diagnosis.

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.

Unless there is actuarial justification, an insurer may not refuse to insure or make or allow a differential in ratings, premium payments, or dividends in connection with life insurance and annuity contracts because the applicant or policyholder has the sickle-cell trait, thalassemia-minor trait, hemoglobin C trait, Tay-Sachs trait, or a genetic trait that is harmless in itself.