Genome Statute and Legislation Database

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.

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's.

An employer or labor organization may not discriminate against employees, applicants or members based on a predisposing genetic characteristic. An employer or employment agency may not print or circulate materials or use a form of application that discriminate based on a predisposing genetic characteristic. Additional provisions apply to employers, labor organizations, employment agencies, and licensing agencies. A genetic test may be required as a condition of employment if directly related to possible increased risk of disease in the work environment or, with informed consent, for workers compensation and to determine susceptibility to toxins found in the workplace environment.

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.

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.

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

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.

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

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.

A person that conducts research on blood spots, other specimens, or registry data maintained by the health department must follow IRB processes for human subjects research, including obtaining parent or guardian authorization.

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.

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.

It is an unfair and deceptive act or practice in the business of insurance to engage in any underwriting standard or other practice that due solely to any health status-related factor, including genetic information, terminates or fails to renew an existing individual policy, contract, plan of health benefits, or a health benefit plan issued to an employer, for which an individual would otherwise be eligible, or, with respect to a health benefit plan issued to an employer, excludes or causes the exclusion of an individual from coverage under an existing employer-provided policy, contract, or plan of health benefits. Insurers issuing accident and sickness insurance, self-insurers or public employee health benefit plans may not consider information obtained from genetic screening or testing in processing an application or in determining insurability or inquire into the results of genetic screening or testing or use such information to cancel, refuse to issue or renew, or limit benefits. The superintendent of insurance has the authority to investigate violations of this provision.

Parental consent is required to store, transfer, use or database DNA from any newborn child.

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.

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.

For purposes of distinguishing between or discriminating against or restricting any right or benefit otherwise due or available to an employee or prospective employee other than in connection with the determination of insurance coverage or benefits an employer may not (1) seek to obtain or use a genetic test or genetic information of the employee or the prospective employee, or (2) require a genetic test of or require genetic information from the employee or prospective employee.

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

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.

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.

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.

Insurance administrators, health plans and providers of accident and sickness insurance, nonprofit hospital corporations, nonprofit medical service corporations, and HMOs are prohibited from releasing genetic information without prior written authorization. Individuals participating in research settings governed by the Federal Policy for the Protection of Human research Subjects are exempt. Tests conducted purely for research are excluded from the requirements set forth, as are tests for somatic (as opposed to heritable) mutations, and testing for forensic purposes. An individual or group health insurance contract, plan or policy (excluding disability income, long term care and insurance supplemental policies) may not use a genetic test or genetic information or request for genetic tests or genetic information or the results of a genetic test for specified purposes, including for underwriting. Provisions pertaining to the release the results of a genetic test or genetic information do not apply to releases in a format whereby individual identifiers are removed, encrypted, or encoded so that the identity of the individual is not disclosed. Authorization is required for each re-disclosure except for participating in research settings governed by the Federal Policy for the Protection of Human research Subjects.

In the statute sections pertaining to large group, individual health insurance and small employer health insurance a health status-related factor is defined to include genetic information, and pre-existing condition exclusions may not be based on genetic information the absence of a diagnosis.

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.

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.

Health insurers offering individual health plans may not cancel, deny, adjust premiums or rates or impose pre-existing conditions exclusions based on the genetic information of an individual or family member or based on a request for genetic services. Health insurers offering group health plans may not adjust premiums or contributions based on genetic information. Health insurers may not request or require genetic information or require an individual to undergo a genetic test. The law also prohibits disclosure of genetic information without informed written consent, with some exceptions such as for law enforcement purposes or as allowable under state and federal statutes. It is required to obtain informed consent prior to performing a genetic test, with some exceptions such as for diagnosis or treatment of an individual if performed by a clinical laboratory that has received a specimen referral from the individual's treating physician or another clinical laboratory. Penalties for violations of the law are established and are intended to be in addition to those set forth under the Genetic Information Nondiscrimination Act of 2008, Public Law 110-233.

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

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.

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

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.

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.

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.

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.

Under the Health Insurance Portability, Availability and Renewal Act group health plans and other issuing group health_insurance_coverage may not base rules for eligibility or continued eligibility on a health status-related factor, including genetic information.

Pertains to medical authorization required to release protected health information in a health care liability claim. Allows the patient or patient's personal or legal representative to exclude genetic information from the authorization.

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.

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.

Pre-existing conditions and health status-related factors are defined to include genetic information with respect to multiple-employer welfare arrangements and the health insurance portability and accountability act.

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

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

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.

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

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.

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.

Genetic information may not be treated as a pre-existing condition in the absence of a diagnosis. The genetic testing privacy act, which prohibits health insurance discrimination, is applicable to insurers except as permitted under the Medicare Supplement Minimum Standards Act. The insurance commissioner may adopt rules regarding nondiscrimination for genetic testing or genetic information in Medicare supplement policies and certificates.

Governs the use of biometric identifiers, including human biological samples used for valid scientific testing or screening, by educational entities.

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).

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.

Employers or labor organizations may not use information about genetic testing, genetic counseling, or genetic disease for purposes specified. Civil and criminal penalties are set forth for violations.

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