Genome Statute and Legislation Database

An employer may not discriminate against an individual in compensation or in terms, conditions or privileges of employment, unless based upon a bona fide occupational qualification, because of genetic information. The statutes include nondiscrimination provisions that apply to other entities, including but not limited to labor organizations and employment agencies. The Massachusetts Commission against discrimination investigates complaints of unfair discrimination based on genetic information.

Insurers or corporations delivering group or blanket health policies that provide hospital, surgical or medical expense coverage may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information. Individual and group or blanket health insurance policies or contracts may not impose pre-existing condition exclusions based on genetic information in the absence of a diagnosis.

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.

Individual or group health benefit plan or insurers may not (1) deny, cancel, or refuse to renew the benefits or coverage, or vary the premiums, terms, or conditions for the benefits or coverage, for any participant or beneficiary based on a genetic test for which symptoms have not manifested or a request or receipt of genetic services or (2) disclose any genetic test without prior authorization for each disclosure. A group or individual health benefit plan or insurer or a disability income insurer may not request or require the disclosure of any genetic test about a participant or beneficiary without prior written authorization for each disclosure.

A physician or an individual to whom the physician has delegated authority to perform a selected act, task, or function may not order a predictive genetic test without prior written informed consent and in the manner specified with some exceptions such as newborn screening. The health department must develop a model informed consent form that, if used, bars the person tested from bringing any civil action on the basis that consent was not obtained.

Individual and group health benefit plans that request an applicant for coverage to submit to a genetic test for a permissible purpose must notify the applicant that the test is required, disclose to the applicant the proposed use of the results, and obtain prior written informed consent. A health benefit plan issuer may not use genetic information or the refusal of an applicant to submit to a genetic test to reject, deny, limit, cancel, refuse to renew, increase the premiums for, or otherwise adversely affect eligibility for or coverage under the plan. Genetic material obtained from an individual for a genetic test must be destroyed promptly after the purpose for which it 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. A health benefit plan issuer may redisclose genetic information without authorization for actuarial or research studies if the tested individual could not be identified in any actuarial or research report and any materials that identify a tested individual are returned or destroyed as soon as reasonably practicable.

No individual or his/her family member may be required to undergo genetic testing as a condition of doing business with another person. Genetic testing may not be performed on any individual or anywhere on any resident of the state based on bodily materials obtained within the state without prior written and informed consent with some exceptions. Additional provisions address disclosure of results. The statutes establish a right to civil action by aggrieved individuals.

A policy of insurance may not be underwritten or conditioned on a requirement to undergo genetic testing or the results of genetic testing. Civil and criminal penalties are set forth for violations.

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.

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.

An expense-incurred hospital, medical, surgical policy or certificate or health care corporation may not require an insured or his or her dependent or an asymptomatic applicant or his or her asymptomatic dependent to undergo a genetic test or disclose whether a genetic test has been conducted, the results of a genetic test or genetic information.

Any individual, corporation, association, partnership, insurance support organization, fraternal benefit society, insurance producer, third-party administrator, self-insurer, or any other legal entity engaged in the business of insurance that issues accident and sickness insurance policies or administers a health insurance plan may not deny or condition the issuance or effectiveness of a policy on a pre-existing condition or genetic information. These entities also may not discriminate with respect to pricing a policy or certificate, including premiums, based on genetic information. A violation is an unfair and deceptive act or practice. An insurer also may not request or require a genetic test with an exception for research. An insurer may request a genetic test if the request is pursuant to research that complies with the Common Rule and other specified criteria are met.

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

An individual's health care information, including information about individual cells or their components or genetic information, is confidential. Authorization is required to disclose this information other than to the individual by the health care practitioner or facility with some exceptions. The definition of health care information excludes information that protects the anonymity of the individual by means of encryption or encoding of individual identifiers or information pertaining to or derived from federally sponsored, authorized or regulated research governed by 21 Code of Federal Regulations, Parts 50 and 56 and 45 Code of Federal Regulations, Part 46, to the extent that such information is used in a manner that protects the identification of individuals.

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.

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information.

If a firefighter is diagnosed with breast cancer after five years of employment, and if it is diagnosed before the age of forty without a breast cancer 1 or breast cancer 2 genetic predisposition to breast cancer, the disease is presumed to be proximately caused by employment as a firefighter.

A person, firm, corporation, or the state of Washington, its political subdivisions, or municipal corporations may not require any employee or prospective employee to submit genetic information or submit to screening for genetic information as a condition of employment or continued employment.

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.

An employer may not use genetic information or genetic test results of an employee or prospective employee to distinguish between, discriminate against, or restrict any right or benefit otherwise due or available to such employee or prospective employee. Exceptions are provided for the underwriting of group life, disability income and long-term care insurance, actions required by law or regulation, action taken with written permission of an employee or prospective employee, and the use of genetic information when it is directly related to job performance and assigned responsibilities.

Group health insurers may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information or impose a pre-existing condition exclusion based on genetic information. The sections of the statutes pertaining to Individual health insurance and multiple employer self-insured health plans define health status-related factor to include genetic information. Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis within the South Carolina health insurance pool.

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.

A health maintenance organization, company, insurance broker, medical service corporation, non-profit hospital service corporation or preferred provider organization may not cancel, refuse to issue or renew, or make any distinction or discrimination in the amount of payment of premium or rates charged, in the length of coverage or in any of the terms and conditions based on genetic information. These entities may not require genetic tests or private genetic information.

The law sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on 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.