Genome Statute and Legislation Database

The statute provides coverage of specified services for women who meet the age requirements set forth in the statute. If a woman is believed to be at increased risk for breast cancer due to 1) family history or prior personal history of breast cancer or 2) positive genetic testing or other indications as determined by a woman's physician advanced practice registered nurse, individual and group health insurers must provide a mammogram, which may be provided by breast tomosynthesis at the option of the woman covered under the policy, and comprehensive ultrasound screening of an entire breast or breasts. Ultrasound screening is provided only if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology.

Any public health surveillance activity which is also research is subject to the requirements for research using human subjects.

No insurer may request or require an individual proposed for insurance coverage to submit to a genetic test without prior written informed consent. Further disclosures require additional consent. If an adverse underwriting decision is based on the results of a genetic test, the insurer must notify the individual. No insurer who lawfully possesses information derived from a genetic test on a biological sample may incorporate the information into the record of a non-consenting individual. Penalties for violations are set forth.

Employers may not discriminate against an individual based on genetic test results, notwithstanding professionally developed ability tests that are not designed to discriminate because of race, color, religion, sex or national origin.

Genetic information may only be released to the individual tested and to other authorized persons with a few exceptions. An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance, and an insurer that receives this information may not use it for non-therapeutic purposes unless the favorable results of a genetic test are voluntarily submitted. An employer, employment agency, labor organization, and licensing agency must treat genetic testing and genetic information in a manner that is consistent with federal law, including but not limited to the Genetic Information Nondiscrimination Act of 2008. Prohibited actions by employers, employment agencies and labor organizations are specified. No person may disclose the identity of any person upon whom a genetic test is performed or the results of a genetic test in a manner that permits identification of the subject of the test with some exceptions. A company providing direct-to-consumer genetic testing must obtain consent from the individual tested to share genetic information with any health or life insurance company.

An employer may not (1) seek to obtain, obtain or use genetic screening or testing information of an employee or a prospective employee to discriminate against an employee or a prospective employee or (2) subject any employee or prospective employee to any genetic screening or test.

The health department must adopt and promulgate rules and regulations relating to the use_of_residual_newborn_screening_specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department. The health department also must develop a pamphlet which explains that residual newborn blood specimens may be used for approved public health research.

Reports, records, and information obtained by the health department for newborn screening that do not identify a child or the family of a child will not be released for public health research purposes unless a parent, managing conservator, or guardian of the child consents to disclosure. Newborn screening blood spots and associated data are confidential under law and may only be used as specified. If a family consents to disclosure of nonidentifiable reports, records and information for public health research, any subsequent disclosures must be approved by an IRB or privacy board of the health department and the Health Commissioner or his or her designee. research for public health purposes is defined to include purposes that relate to cancer, a birth defect, an infectious disease, a chronic disease, environmental exposure, or newborn screening.

No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute.

A person may not be required to undergo genetic testing with some exceptions. Genetic testing may not be performed on any individual or any bodily materials be released for purposes of genetic testing without prior written authorization and informed consent except for (1) medical research where the identity of the subject is unknown, (2) if the research is conducted with anonymized medical information, where individual identifiers are encrypted or encoded, and the identity of the individual is not disclosed, or (3) if the identity of the individual is known, where standards of protection are equal to those contained in regulations promulgated by the federal Office for Protection from research Risk (OPRR).

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order.

A physician or individual to whom a physician has delegated authority must obtain informed written consent to order a pre-symptomatic or predictive genetic test. Required contents of the informed consent form are specified, and the department of community health with others must develop a model consent form, which, if used, bars the test subject from bringing any civil action for damages based on failure to obtain consent. The public health department may investigate activities thought to be in violation of the law and report its findings by to the appropriate disciplinary subcommittee.

Creates the Parents' Bill of Rights, including the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order.

This statute was amended as part of 2011 CA SB 559, referred to as CalGINA, by adding genetic information to the list of characteristics addressed in the Unruh Civil Rights Act. All people in California are considered free and equal, and no matter what their sex, race, color, religion, ancestry, national origin, disability, medical condition, genetic information, marital status, sexual orientation, citizenship, primary language, or immigration status are entitled to the full and equal accommodations, advantages, facilities, privileges, or services in all business establishments of every kind whatsoever.

An employer, labor organization, or employment agency may not (1) discriminate against any employee based on genetic information, (2) require, collect, purchase, or disclose genetic information or information about a request or receipt of genetic services with respect to an employee, or (3) maintain genetic information or information about a request for or the receipt of genetic services in general personnel files. Exceptions regarding disclosure include disclosure to an occupational or other health researcher if the research complies with Part 46 of Title 45 of the Code of Federal Regulations. Additional prohibitions apply to labor organizations with respect to membership and to employers, labor organizations and employment agencies with respect to training. Employers, employment agencies and labor organizations also may not discriminate because an individual has sickle cell trait.

A person who directly or indirectly advertises or solicits business for diagnostic laboratory tests or procedures is a covered entity under HIPAA and must make certain disclosures. The law does not apply to germline genetic or genomic testing for the analysis, diagnosis or prediction of human disease.

The statutes contain provisions on the acquisition, collection, retention, transmission or use of genetic information. Consent requirements provide an exemption (1) if DNA, genetic information or results of genetic analysis are not identified with the person or person's family members or (2) for the purpose of medical or scientific research and education (including retention of gene products, genetic information or genetic analysis if the identity of the person or person's family members is not disclosed.) Discrimination by an insurer against a person or his/her family member based on genetic analysis, genetic information or genetic propensity is prohibited. Life, disability income or long-term care insurance are exempt if use is based on sound actuarial principles or related to actual or reasonably anticipated experience. Upon request a persons genetic information or samples must be promptly destroyed with some exceptions, including if retention is authorized under a research protocol approved by an institution review board pursuant to federal law. It is unlawful for a person to use genetic information in employment or recruiting. A person whose rights under the provisions of the Genetic Information privacy Act have been violated may bring a civil action for damages or other relief.

Makes state law consistent with selected federal consumer protections in the patient protection and affordable care act. Prohibits a health carrier or health plan from establishing rules for eligibility based on health-status related factors such as genetic information.

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

Employers may not discriminate against any individual because of being regarded as having an impairment, which includes employer consideration of (1) an individual's genetic information, (2) genetic information of any family member of an individual, or (3) the individual's refusal to submit to a genetic test as a condition of initial or continued employment. The statutes also contain provisions pertaining to employment agencies and labor organizations.

An insurer in making any underwriting decision may not (1) require or request a person or his/her blood relative to provide genetic information or take a genetic test, (2) inquire about a genetic test or what the results of any such test were unless given approval by that person, or (3) consider without the approval of such person the fact that genetic information or a genetic test was taken or refused by a person or blood relative of the person or the results of a test. A violation is an unfair trade practice. The law does not apply to any policy, contract or certificate of life insurance, reinsurance, disability income or long-term care coverage.

Residual newborn screening blood samples may be released for purposes of confidential, anonymous scientific study unless the newborn screening program is otherwise directed. The release of a blood sample must conform with departmental regulations. At the time of testing or at any time after that, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to: (1) return a blood sample in its entirety and any test results not less than two years after the date of testing; (2) destroy a blood sample in not less than two years after the date of the testing; or (3) store a blood sample but not release the blood sample for confidential, anonymous scientific study. A blood sample released for confidential, anonymous study must not contain identifiable information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information.

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that covers a small employer, as defined in subsection (b) of Section 1304 of PPACA and in Section 1357.500 of the California Health and Safety Code, may not establish rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the policy or contract based on any of the following health status-related factors, including genetic information.

Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record.

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.

Provides for the protection of personal information maintained by businesses, including biometric information. Biometric information is defined to include DNA.

The state health department must develop a system for using, for epidemiological survey and research purposes, any waste blood specimen left over after newborn screening. Waste blood specimens used for the purpose of epidemiological survey may not include the name or other identifying characteristics that would identify the individual submitting the specimen.

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.

Prohibits life, long-term care, or disability income insurers from: (1) canceling, limiting or denying coverage, or establishing differentials in premium rates, based on genetic information in the absence of a diagnosis; (2) requiring or soliciting genetic information, using genetic test results, or considering a person's actions related to genetic testing for any insurance purpose.

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.

A person who negligently or willfully discloses genetic test results in an individuals medical records who is applying for or enrolled in a health care service plan, except with written authorization in the format specified, is subject to fines as set forth in the statutes.

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.

The statutes require carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information.

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.

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

No insurer providing accident and health or sickness insurance coverage or extended health_insurance_coverage, mutual benefit society, fraternal benefit society, or health maintenance organization may use an individual's or a family member's genetic information or a request for genetic services to (1) deny or limit any coverage or (2) establish eligibility, continuation, enrollment, or premium payment. These entities may not request or require collection or disclosure of genetic information of an individual or family member or disclose genetic information without written consent.

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 insurance institution, agent or insurance support organization that collects, uses or discloses medical record information must have written policies, standards and procedures for the management, transfer and security of medical record information, including additional protection against unauthorized disclosure of sensitive health information such as information regarding genetic testing and the fact that an individual has undergone a genetic test.

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.

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.