Genome Statute and Legislation Database

In the statutes pertaining to group health plans, health status-related factors are defined to include genetic information, and pre-existing condition exclusion may not be based on genetic information in the absence of a diagnosis.

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.

Employers or employment agencies may not administer a genetic test or request, require, or collect protected genetic information as a condition of employment or affect the terms or conditions of employment or terminate the employment of any person based on protected genetic information. A person may not provide or interpret genetic information on a current or prospective employee for an employer or employment agency. An aggrieved person may bring a civil action.

Every individual or group hospital or medical insurance policy or individual or group hospital or medical services plan contract delivered, issued for delivery, or renewed in this state shall pay for two (2) screening mammograms per year when recommended by a physician for women who have been treated for breast cancer within the last five (5) years or are at high risk of developing breast cancer due to genetic predisposition (BRCA gene mutation or multiple first degree relatives) or high risk lesion on prior biopsy (lobular carcinoma in situ) or atypical ductal hyperplasia.

Provides for the protection of human subjects participating in medical experiments. Enacts the Experimental Subject's Bill of Rights, which details informed consent requirements.

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.

Prohibits health insurers, health maintenance organizations, nonprofit health insurance plan or any person or organization that provides health benefits plans from excluding or limiting certain benefits or denying certain coverage based on a health-status related factor, including genetic information. Health status-related factors also may not be used to (1) cancel or refuse to renew a small employer group plan or individual health plans; (2) establish rules for eligibility; or (3) charge higher premiums than similarly situated individuals in a group health plan.

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees. Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work.

An insurer offering group health_insurance_coverage may not use genetic information as the basis for a pre-existing condition exclusion in the absence of a diagnosis or establish rules for eligibility or continued eligibility based on health status-related factors, including genetic information. An insurer with respect to a self-insured health plan, or a county, city, village or school board that provides health care services for individuals on a self-insured basis, may not (1) require or request any individual or a member of the individual's family obtain a genetic test or reveal whether a test was taken or the results or (2) condition coverage or health care benefits on or use in the determination of rates whether an individual or his/her family member has taken a genetic test or what the results of the test were. Life insurance or income continuance insurers are not subject to the above provisions but may not provide rates or aspects of coverage that are contrary to the risk involved.

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.

An employer, employment agency, labor organization, licensing agency, or its employees, agents, or members may not solicit, require or administer a genetic test as a condition of employment, application, membership or licensure or affect the terms, conditions, or privileges of employment, application, membership, or licensure, of a person who obtains a genetic test. A person may not sell or interpret genetic tests for the above entities except with informed written consent for the purpose of workers compensation or biomonitoring of workplace toxins. Agreements between parties regarding pay or benefit for taking a genetic test are prohibited. The law may be enforced through civil action.

A group health plan or a health insurance issuer offering group health_insurance_coverage may not impose a pre-existing condition exclusion based on genetic information. A group health plan or 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.

Schools must obtain written informed consent from a parent, legal guardian, or student, if the student is 18 years of age or older, before the collection of individual student biometric data, including DNA. The law also establishes additional protections for personally identifiable information, which includes biometric data, maintained by schools.

Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for the treatment of a metastatic or unresectable tumor with a medically necessary drug on the sole basis that the drug is not indicated for the location in the body of the patient's cancer, if the drug is FDA approved for the treatment of the specific mutation of the patient's cancer. Requires health_insurance_coverage for annual MRI at age 25 and annual mammography at age 30 for women with a hereditary susceptibility to breast cancer based on pathogenic mutation carrier status.

It is an unlawful employment practice for an employer, a labor organization or an employment agency to (1) ask or encourage a prospective or current employee or member of the labor organization to submit to a genetic test, (2) require or administer a genetic test to a person as a condition of employment or membership, or (3) deny, alter the terms, conditions or privileges of, or terminate employment or membership based on genetic information.

Requires the Medicaid program to reimburse for exome sequencing for undiagnosed enrollees under the age of 21.

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.

The statute requires the health department to develop a schedule for the retention and disposal of blood specimens. The schedule must allow for the blood specimens to be used for medical research during the established retention period, as long as the medical research is conducted in a manner that preserves the confidentiality of the test subjects and is consistent to protect human subjects from research risks under subpart A of part 46 of subchapter A of title 45 of the code of federal regulations.

Health benefit plans covering small employers and group policies of hospital and medical insurance may not treat genetic information as a pre-existing condition in the absence of a diagnosis. A health status-related factor is defined to include genetic information in the chapter of the law pertaining to small employer employee health insurance.

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.

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.

Personal information, including genetic information, pertaining to state employees is confidential and not open to public inspection. An employee may examine records containing personal information when permitted or required by law.

A person may not (1) obtain genetic information from an individual or from an individual's DNA sample or (2) retain an individuals genetic information without prior informed consent with some exceptions, including for anonymous research where the identity of the subject will not be released. A DNA sample from an individual who is the subject of a research project must be destroyed promptly upon completion of the project or withdrawal of the individual from the project unless consent to retain the sample is provided. Additional provisions address retention and disclosure. The statutes set forth civil and criminal penalties for violations.

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information.

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.

An issuer of a Medicare supplement policies or certificates may not deny or condition the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information. These entities also may not discriminate with respect to pricing on the basis of genetic information; request or require an individual or family member to undergo a genetic test; or use the manifestation of disease in an individual as genetic information about another group member and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met.

An employer, employment agency, or licensing agency may not (1) request, require or administer a genetic test, (2) affect the terms, conditions, or privileges of or terminate employment or licensure of any person who obtains a genetic test, (3) take any other action affecting the terms, conditions or privileges of employment against an employee or a license holder based on the results of a genetic test or the refusal to take a genetic test, submit family history, or reveal whether the employee, applicant or holder has taken a genetic test, (4) otherwise use genetic information to adversely affect the employment, licensure, or application for employment or licensure of any individual, or (5) reveal genetic information about employees, licensees, or applicants. Penalties for violations are set forth.

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.

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Not effective until 10/1/2024.

Directs the director of the office of information technology services to conduct a study on the use of biometric identifying technology. Prohibits the use of biometric identifying technology in schools until July 1, 2022 or until the commissioner of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence.

The law prohibits the collection, retention and disclosure of genetic information without informed consent with some exceptions such as for law enforcement purposes, newborn screening and anonymous research. An individual may inspect, correct and obtain retained genetic information. A person conducting genetic analysis must destroy an individual's genetic information upon request. Genetic information about an individual obtained for purposes exempt from consent requirements may only be used for the purposes obtained and must be destroyed or returned to the individual upon completion of use or in accordance with law.

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.

Health insurers may not discriminate based on genetic information or tests. Authorization is required to obtain genetic information or samples. Consent requirements are established to collect, retain, transmit or use genetic information. Exceptions under consent requirements include medical or scientific research and eduction and for use in medical repositories and registries if it does not contain personally identifiable information. Health insurers may not release genetic information without prior written authorization. Exceptions for release requirements include (1) if an individual is participating in research settings, including those governed by the federal policy for the protection of human subjects, and (2) tests conducted purely for research. A carrier or organized delivery system offering group health_insurance_coverage may not establish rules for eligibility or continued eligibility based on a health status-related factors, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Any hospital, medical, or surgical expense-incurred policy or certificate and self-funded employee benefit plan to the extent not preempted by federal law may not require a covered person or his or her dependent or an asymptomatic applicant for coverage or his or her asymptomatic dependent to undergo any genetic test before issuing, renewing, or continuing the policy or certificate. This does prohibit requiring an applicant for coverage to answer questions concerning family history.

An insurance provider may not deny or cancel health_insurance_coverage or vary the premiums, terms, or conditions for health_insurance_coverage for an individual or his or her family member on the basis of a request or receipt of genetic services. An insurer may not request or require an individual to whom it provides health_insurance_coverage or an applicant to disclose to the insurer genetic information about the individual or family member of the individual. Life insurance, disability income, long-term care, accident only, hospital indemnity or fixed indemnity, dental or vision policies are exempt from the law.

A group health plan, and a health insurance issuer offering group health_insurance_coverage may not use genetic information in the absence of a diagnosis as the basis for a pre-existing condition exclusion or establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

It is unlawful to obtain any genetic information of a person without informed consent with some exceptions, including for use in a study where the identities of the persons from whom the genetic information is obtained are not disclosed to the person conducting the study. It is unlawful to retain genetic information that identifies a person without first obtaining the informed consent with some exceptions. Except as otherwise provided, a person who obtains the genetic information for use in a study must destroy that information upon completion of the study or withdrawal of the person from the study. Criminal penalties and a right to civil action are established for violations.

An employer may not in connection with a hiring, promotion, retention, or other related decision access or (1) take into account genetic information, (2) request or require an individual to consent to release genetic information, (3) submit to a genetic test, or (4) inquire or take into account that an individual or blood relative of that person has taken a genetic test. An employer may compel disclosure of genetic information for specified reasons. A health care insurer may not in connection with the offer or renewal of an insurance product or in the determination of any underwriting decision access or otherwise (1) take into consideration private genetic information about an asymptomatic individual, (2) request or require an asymptomatic individual to consent to a release for the purpose of accessing private genetic information, (3) request or require an asymptomatic individual or his blood relative to submit to a genetic test, or (4) inquire into or otherwise take into consideration the fact that an asymptomatic individual or his blood relative has taken or refused to take a genetic test. An individual whose rights have been violated bring civil action.

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.

The law requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests.

A health insuring corporation may not (1) cancel or fail to renew the coverage because of any health status-related factor, including genetic information, (2) require an individual seeking coverage to submit to genetic screening or testing or taken into account or inquire about such testing, (3) make a decision adverse to the applicant based on entries in medical records or other reports of genetic screening or testing, or (4) cancel or refuse to issue or renew coverage for health care services based on the results of genetic screening or testing, or (6) limit benefits of an individual or group policy, contract, or agreement based on the results of genetic screening or testing. A violation of these provisions is an unfair and deceptive act or practice in the business of insurance. Further provisions apply upon the repeal of the current protections, which are in effect until February 9, 2014.

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.

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 law requires businesses to establish certain protections when using personal information. Personal information is defined to include an individual's genetic print.

It is an unlawful employment practice to refuse to hire or employ or to bar or to discharge or require to retire from employment such individual or to discriminate against such individual in compensation or in terms, conditions or privileges of employment based on genetic information or because of the refusal to submit to a genetic test.

An employer may not request, require, solicit or administer a genetic test as a condition of employment or refuse to hire, fail to promote, discharge or otherwise adversely affect any terms or conditions of employment of any employee or prospective employee solely on the basis of a genetic characteristic or the results of a genetic test, regardless of how the employer obtained such information or results. An employee may bring an action in a court of competent jurisdiction over an employer who took adverse action against the employee.

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.

The law requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance Marketplace is a state health benefit exchange as described in section 1311 of the federal Patient Protection and Affordable Care Act (Public Law 111-148), and further defined through amendments to the act and regulations issued under the act.