Genome Statute and Legislation Database

With respect to disability insurance or any health benefit plan, no person may discriminate on the basis of a genetic test or private genetic information in the issuance of coverage or the fixing of rates, terms or conditions.

Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test.

A health carrier to notify a covered person of the right to request an external review and include appropriate statements and information in the written notice of a final adverse decision. Health carriers also must include with the notice an authorization form or other document developed by the state that complies with the federal Genetic Information Nondiscrimination Act.

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.

It is a discriminatory practice for an employer, an employment agency, or for any labor organization to request or require genetic information from an employee, a person seeking employment or a member. These entities may not discharge, expel or otherwise discriminate against any person on the basis of genetic information.

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.

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.

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.

These statute sections contain provisions from 2011 CA SB 559, referred to as CalGINA. The opportunity to seek, obtain, and hold employment without discrimination because of genetic information, is recognized as a civil right. It is an unlawful employment practice, unless based on a bonafide occupational qualification, to subject any employee, applicant or other person to a test for the presence of a genetic characteristic. In addition, a person in the State of California may not, on the basis of genetic information, be unlawfully denied full and equal access to the benefits of, or be unlawfully subjected to discrimination under, any program or activity that is conducted, operated, or administered by the state or by any state agency, is funded directly by the state, or receives any financial assistance from the state.

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.

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.

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.

If a firefighter is diagnosed with breast cancer after 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.

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.

Health-status related factor is defined to include genetic information in Title 10 Article 16, which pertains to health care coverage.

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.

Prior informed consent is required to perform a genetic test. Further disclosures require additional consent. For medical research purposes and with approval from an institutional review board and consent, a biological sample may be retained for longer than 60 days and be used for scientific research. Samples may be used for research conducted in accordance with applicable law and regulation and pursuant to a research protocol approved by an institutional review board, if individuals who provided the samples have given prior informed consent for the use of the sample for general research purposes without restrictions, and the samples have been permanently stripped of identifying information or coded to protect the individuals identity. Upon request samples that have not already been used for research must be destroyed. Family members of a research participant may not be contacted without the consent of the individual. Additional provisions address confidentiality, the incorporation of information into medical records, disclosure and penalties for violations.

A health benefit plan issued in connection with a group health plan may not impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis. A health status-related factor is defined to include genetic information as defined in section of the statutes pertaining to individual group accident and sickness insurance.

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

The statutes prohibit discrimination based on genetic information of an individual or family member or the request or receipt of genetic services by a hospital, health, or medical expense insurance policy, hospital or medical service contract, employee welfare benefit plan, health and accident insurance policy, preferred provide organization or any other insurance contract of this type. Other restrictions also are placed on these entities with respect to genetic information and testing. An insurer offering individual or group health_insurance_coverage may request a genetic test if the request is made in compliance with the Common Rule and other specified criteria are met. Exceptions under the law include anonymous research where the identity of the subjects will not be released. An insured or enrollees genetic information is the property of the individual to whom it pertains and may not be retained without authorization with some exceptions. Civil penalties for violations are set forth.

Requires a primary care provider to administer a genetic test for harmful mutations in the BRCA gene if clinically indicated as a result of genetic counseling. The State Plan for Medicaid must pay the nonfederal share of expenditures incurred for screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required. Insurers must cover the cost of screening, genetic counseling and testing for harmful mutations in the BRCA gene for women under circumstances where such screening, genetic counseling or testing is required.

The statutes restrict the use and disclosure of genetic tests and the use of family history by a licensing authority. A sample obtained from an individual for a genetic test must be destroyed promptly after the purpose for which the sample was obtained with some exceptions, including (1) authorized retention of the sample for medical treatment or scientific research or (2) if the sample was obtained for research that is cleared by an institutional review board, and retention of the sample is under a requirement the institutional review board imposes on a specific research project or authorized by the research participant with institutional review board approval under federal law. Genetic information may not be disclosed without written authorization with some exceptions, including (1) if the disclosure is for information from a research study in which the procedure for obtaining informed written consent and the use of the information is governed by national standards for protecting participants involved in research projects, including guidelines issued under 21 C.F.R. Part 50 and 45 C.F.R. Part 46 and (2) the information does not identify a specific individual.

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.

Individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract must provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing.

A person, firm, corporation, unincorporated association, state agency, unit of local government, or any public or private entity may not deny or refuse employment to or discharge any person or because of the person's having requested genetic testing or counseling services, on the basis of genetic information obtained concerning the person or a member of the person's family, or because the person possesses sickle cell trait or hemoglobin C trait.

Medical data collected, stored, used, or disseminated by or filed with the commissioner in connection with a claim for workers' compensation benefits does not constitute genetic information for the purposes of �13.386 of the statutes pertaining to genetic privacy.

Group accident and sickness policies may not treat genetic information as a pre-existing condition or base eligibility or continued eligibility of any individual on health-status-related factors, including genetic information.

All testing results and personal information from hereditary disorders programs obtained from any individual, or from specimens from any individual, is confidential and is considered a confidential medical record except for information that the individual, parent, or guardian consents to be released, provided after being fully informed of the scope of the information requested to be released, of all of the risks, benefits, and purposes for the release, and of the identity of those to whom the information will be released or made available, except for data compiled without reference to the identity of any individual, and except for research purposes, provided that pursuant to the Common Rule The research must first be reviewed and approved by an IRB. The health department, any entities approved by the department, and researchers must maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and (4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes.

Conforms the Maine Apprenticeship Program to the Federal Equal Employment Opportunity Act of 1972. Requires a posting of statement that the apprentice will be accorded equal opportunity in all phases of apprenticeship employment and training, without discrimination because of various factors, including genetic information.

Health carriers may not establish rules of eligibility or continued eligibility for health coverage based on health status related factors of any employee or dependent, including genetic information, or impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Requires informed consent to conduct human research. Requires institutions or agencies conducting or proposing to conduct or authorize human research to establish a human research review committee.

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.

General managed care plans and health benefit plans covering large and small employers may not treat genetic information in the absence of a diagnosis as a pre-existing condition.

An insurer, health service corporation, health maintenance organization, fraternal benefit society, or other issuer of an individual or group policy or certificate of insurance may not discriminate based on a persons genetic traits. These entities also may not underwrite or condition coverage on a requirement or agreement to take a genetic test or on genetic information of an individual or his or her family member, and they may not seek genetic information for a purpose that is unrelated to assessing or managing ones health, inappropriate in an asymptomatic individual, or unrelated to research in which a subject is not personally identifiable. These entities may not require an individual to obtain a genetic test also with some exceptions. The law does not apply to life, disability income or long-term care insurance.

An employer may not to seek to obtain, obtain, or use genetic information of a current or prospective employee discriminate or restrict any right or benefit otherwise due or available to an employee or a prospective employee. A few exceptions are provided such as if the employer uses the test results for the limited purpose of taking disciplinary action against the employee based only on alleged misconduct. Any employee or prospective employee claiming to be aggrieved by an unlawful employment practice may bring a civil suit.

The law requires breast cancer screening with mammography annually for persons with a predisposition to breast cancer.

An insurer, nonprofit health service plan, or health maintenance organization, which does not include life insurance policies, annuity contracts, long-term care insurance policies, or disability insurance policies, may not (1) use a genetic test, the results of a genetic test, genetic information, or a request for genetic services to affect a health insurance policy or contract, (2) request or require a genetic test, the results of a genetic test, or genetic information for certain purposes, or (3) release identifiable genetic information or the results of a genetic test except for internal business and to a participating health care provider without prior written authorization. Disclosure of identifiable genetic information to an employee or authorized health care provider may only be for the purpose of providing medical care to patients or conducting research approved by an institutional review board established in accordance with federal law. The insurance commissioner has the authority to issue orders where a violation is found.

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

An employer, labor organization or employment or licensing agency may not (1) solicit, require or administer a genetic test to any person as a condition of employment, labor organization membership or licensure or affect the terms, conditions or privileges of employment, labor organization membership or licensure; (2) terminate the employment, labor organization membership or licensure of any person who obtains a genetic test; or (3) require or administer a genetic test without the prior written and informed consent of the employee, labor organization member or licensee, or of the prospective employee, labor organization member or licensee, who is the subject of the test. No person may disclose to an employer, labor organization, employment agency or licensing agency that an employee, labor organization member or licensee, or a prospective employee, labor organization member or licensee, has taken a genetic test, and no person may disclose the results of such a test to an employer, labor organization, employment agency or licensing agency without the prior written and informed consent of the subject of the test.

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

Preexisting condition exclusions may not be based on genetic information in the absence of a diagnosis. Insurers issuing group health plans may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

Requires health plans to cover the cost of the genetic testing of the BRCA1 and BRCA2 genes to detect an increased risk for breast and ovarian cancer when recommended by a healthcare provider in accordance with the United States Preventive Services Task Force recommendations.

genetic_discrimination with regard to apprenticeship agreements is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information.

Enacts the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to:
(1) provide a consumer clear information regarding the company's collection, use, and disclosure of genetic data;
(2) provide a consumer a publicly available privacy notice; (3) obtain a consumer's consent for certain collection, use, or disclosure of the consumer's genetic data; (4) protect a consumer's genetic data; (5) allow a consumer to access and delete the consumer's genetic data; and (6) upon request, destroy a consumer's biological sample. Prohibits a direct-to-consumer genetic testing company from disclosing a consumer's genetic data to certain persons.